In May 2020, as the novel coronavirus (COVID-19) pandemic was taking hold in the United States, the Immune Deficiency Foundation (IDF), advocating for individuals with primary immunodeficiencies, recognized that, while there were multitudes of patient advocacy coalitions, there was no group advocating specifically for the immunocompromised population as a whole. It became clear that there was a need to ensure that policies were in place to protect this group of people. Further, IDF understood that people with compromised immune systems have routinely taken exceptional precautions that the general population was now just adopting. Bringing together immunocompromised groups to inform policy during the pandemic and in the future would not only help those who were immunocompromised but could benefit all Americans.
With this in mind, IDF pulled together a steering committee composed of The AIDS Institute, American Autoimmune Related Disease Association (AARDA), IDF, the Lupus Foundation of America, and Susan G Komen. The assembled group represents a variety of immunocompromised populations, including individuals affected by AIDS, autoimmune diseases, primary immunodeficiencies, and cancer. The steering committee worked together to develop its initial outreach to Congress in July of 2020, a letter signed by over 40 organizations with policy recommendations to protect the immunocompromised during the pandemic. The group continued to work together engaging on issues related to COVID-19 guidelines and policies through the end of 2020. During this time, the steering committee laid the groundwork for a larger collaborative to assemble and planned the group’s first legislative briefing for March 17, 2021, to bring the barriers faced by the immunocompromised community to the forefront.