Abstract: The United States enacted legislation in 2010 that will promote the
use of comparative effectiveness research in the making of healthcare
decisions. Of concern with this relatively new mandate is the possibility of
using comparative effectiveness research as a means only to mitigate costs
rather than to focus on quality of care. This is of particular concern for
patients with rare and chronic conditions, such as primary immunodeficiency
diseases. The Immune Deficiency Foundation (IDF) uses their survey research to
advocate for the needs of patients with primary immunodeficiency diseases to
ensure that their unique medical concerns are not overlooked but instead,
integrated within an overall healthcare emphasis on personalized medicine and
differences in patient treatment response. IDF research shows the efficacy of
treatment with immunoglobulin replacement therapy (IG therapy) for many
patients with primary immunodeficiency diseases, that IG therapy is underused
in the primary immunodeficient community, and that IG therapies are unique and
not interchangeable.
