Public Policy Program

Primary immunodeficiency diseases are relatively rare and chronic conditions, many of which require expensive therapy. As a result, individuals with primary immunodeficiency diseases deal with a variety of issues, which range from state of the art information about diagnosis and treatment, health insurance, access to care, employment, and schooling, to name just a few areas of concern. IDF helps patients and families with questions surrounding these issues every day, and has developed many publications and programs to meet their needs.

In order to help solve some of the problems that our community faces, IDF maintains a full-scale public policy program focused on national and local healthcare issues. The IDF professional staff, its consultants and volunteers work in collaboration with Congress, the Department of Health and Human Services and its agencies, including the Food and Drug Administration, the Centers for Disease Control, the Centers for Medicaid and Medicare Services, the National Institutes of Health, as well as other agencies to impact decisions that affect primary immunodeficient patients and their families.

Although the specific issues may change, the IDF public policy program focuses on three main areas:

• Access to quality health care
• Blood product safety and availability
• Funding for medical and scientific research