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IDF serves thousands through education, advocacy, and research efforts

January 24, 2023

“Our numbers tell the story” declares the recently released 2022 IDF Community Impact flyer—and by all counts, that story involves thousands of people in the primary immunodeficiency (PI) community and beyond. IDF continued to lead the way in supporting PI education, advocacy, and research thanks to more than 500 volunteers and over $7 million in donations, sponsorships, and grants in 2022.

Providing education and support

IDF's community support metrics for 2022.

IDF's community support metrics from the
2022 IDF Community Impact flyer.

Education and support for those living with PI and their caretakers is a fundamental part of IDF’s mission. Ask IDF provided one-on-one assistance to 1,453 individuals on topics like health insurance, finding knowledgeable physicians, and day-to-day management of their condition. And almost as many people connected through IDF’s support groups. 

During 2022, IDF distributed more than 100,000 free copies of educational publications and launched the fourth edition of the IDF School Guide for Students with Primary Immunodeficiency© and the “I Am Immunocompromised” card. More than 6,300 PI community members attended 139 live educational sessions on topics ranging from COVID-19 to CVID and fatigue. These sessions garnered even more views as videos on IDF’s YouTube account.

In addition to educating those with PI and their caretakers, IDF also works to educate medical professionals, and in 2022, IDF launched a special effort to reach clinicians across medical specialties. Staff exhibited at seven medical conferences outside the field of immunology to share resources and raise awareness with healthcare professionals who may not be familiar with PI or IDF. This initiative will continue in 2023. By spreading awareness among providers in a variety of specialties who may unknowingly see patients with undiagnosed PI, IDF hopes to reduce the time to diagnosis.

Advocating for those with PI

Perhaps the biggest policy win for the PI community in 2022 was the last-minute inclusion of a permanent Medicare benefit covering the medication, services, and supplies needed for home intravenous immunoglobulin (IVIG) treatment in the end-of-year federal omnibus legislation. After working with legislators and the Centers for Medicare and Medicaid Services (CMS) for almost a decade, IDF secured this benefit for all Medicare beneficiaries with PI starting January 1, 2024. In the meantime, the Medicare Home IVIG Demonstration Project (demo) will continue to provide coverage for home IVIG to project enrollees through December 31, 2023. A recent FAQ answers questions about the demo and enrollment in light of the new permanent benefit.

Map of copay accumulator bans, RDACs, and plasma center regulations.

Map of IDF state advocacy wins from the
2022 IDF Community Impact flyer

IDF saw movement on other policy issues affecting individuals with PI as well, including the passage of legislation banning copay accumulators in two states and the establishment of Rare Disease Advisory Councils (RDACs) in four states. Two states also aligned their regulations on plasma donation centers with federal regulations. This policy change will increase the number of plasma donation centers in those states, ultimately increasing the supply of plasma needed to manufacture immunoglobulin. 

Funding research and health equity 

The immune system is an incredibly complex network of organs, cells, proteins, and small molecules. Research on how PI leads to clinical symptoms and how to treat these disorders requires ongoing investment. At the same time, understanding barriers to equitable care is key for ensuring cutting-edge research reaches all people affected by PI. To further research and its equitable application, IDF awarded four research grants and three white paper challenge awards totaling more than $170,000 in 2022. 

In 2023, IDF will conduct its fifth national patient survey to collect data on diagnosis, treatment, and life with PI. This important data will inform IDF’s educational programs and advocacy efforts.