Securing research funding for PI

IDF engages with federal and state agencies to advocate for increased research funding for primary immunodeficiency (PI), also known as inborn errors of immunity (IEI). 

Basic and clinical research on PI has not only shed light on what causes these disorders and how to treat them, but it has also contributed to the scientific community’s fundamental understanding of how the immune system works. Most federal funding for PI research comes from the National Institutes of Health (NIH), which funds both internal (intramural) and external (extramural) research on PI. 

According to a searchable database of NIH funding, the agency spent $118 million on projects relevant to PI in fiscal year (FY) 2023. That translates to $70-350 per person living with PI in the U.S., depending on which estimate of how many people have PI in the U.S. is used. However, similar searches for cystic fibrosis and hemophilia show NIH spent more than $1,000 on research for each person living with those conditions in FY 2023. These estimates suggest that NIH underfunds PI research. IDF is working to address this underfunding with the agency in a multi-pronged approach.

1. Get PI added to NIH’s Research, Condition, and Disease Categorization (RCDC) system, allowing for more accurate reporting of funding to Congress and the public. PI’s addition to the RCDC also raises its profile among funders and agencies in general.
2. Have the National Institute of Allergy and Infectious Diseases (NIAID) issue a dedicated funding opportunity for PI research. 
3. Secure better representation of PI expertise on study sections (also known as scientific review groups).