Improving access to care for the minority community.

The national needs assessment revealed that the minority patient populations face a significantly greater challenge to accessing care than non-minorities. The NHPCC sought the input of consumer groups to develop a survey interview to elicit issues specific to the Hispanic and African-American populations.

The NHPCC collaborated with the Cultural Diversity Working Group of the National Hemophilia Foundation and representatives of the Hemophilia Federation of America to identify factors contributing to the barriers to care in minority populations.

This information was incorporated into a telephone survey of minority patients recruited from consumer organizations. While most respondents reported that they were receiving the services and information they needed, they also indicated that there were language barriers (especially in emergency rooms), a lack of educational materials that were culturally appropriate, difficulty getting to the HTC and educational programs, and barriers related to insurance.