Advocate
IDF maintains a robust advocacy program focused on national, state, and local healthcare and public health policy issues relevant to the primary immunodeficiency (PI) community.
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Understanding primary immunodeficiency (PI)
Understanding PI
The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
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Living with PI
Living with PI
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
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Get involved
Get involved
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
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Advancing research and clinical care
Advancing research and clinical care
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Take action
When we need elected officials and other policymakers to hear the PI community’s perspective, we send an Action Alert to the community. Customize each alert with your information and hit send. It’s that easy.
Ensuring access to care
IDF advocates for policies that allow patients ready access to safe and quality care, in the site of care that is most appropriate, with the treatment recommended by their healthcare providers, and with minimization of cost to the patient.
Protecting access to immunoglobulin therapy
IDF advocates with policymakers and payers for insurance coverage of immunoglobulin (Ig) replacement therapy for those with PI, including access to specific Ig products, modes of administration, and sites of care.
Learn about Ig access
Broadening plasma donation access and awareness
Many with primary immunodeficiency rely on immunoglobulin replacement therapy (IVIG and SCIG), which is made from blood plasma. IDF advocates for plasma donation access and awareness to ensure adequate plasma supply.
Learn about plasma donation
Expanding telehealth services
People with primary immunodeficiency are immunocompromised and being able to receive and have insurance coverage for telehealth services helps them to avoid being exposed to infections in healthcare settings.
Learn about telehealth
Addressing copay accumulators and maximizers
Insurance copay accumulators and maximizers punish those using copay assistance by not counting it toward deductibles and out-of-pocket maximums. Help IDF fight this unfair practice at the state and federal levels!
Ban accumulators/maximizers
Expanding Medigap access
To protect Medicare beneficiaries from high out-of-pocket costs, it is essential to expand access to Medicare supplemental insurance plans, also known as Medigap plans.
Learn about Medigap
Providing a voice for those with PI
IDF advocates to ensure the voices of individuals living with PI, who are immunocompromised, are represented in public health policy debates.
Leading the Immunocompromised Collaborative
The Immunocompromised Collaborative is the united voice of communities whose health status makes them most vulnerable to threats from infectious disease.
Get to know the Collaborative
Establishing Rare Disease Advisory Councils
Rare Disease Advisory Councils (RDACs) serve as liaisons between state governments and their constituents with rare diseases. IDF supports the creation of RDACs in all 50 states.
Learn about RDACs
Tackling antimicrobial resistance
Antimicrobial resistance (AMR) describes the failure of a particular drug to treat an infection that the drug was previously effective against. For those with PI, who rely heavily on antimicrobials, a lack of effective infection-fighting drugs could be devastating.
Learn about AMR
Faces of IDF
Submit your story and picture to create a personal advocacy one-pager you can share with policymakers.
Expanding screening and diagnosis
IDF advocates for policies that ensure universal newborn screening for SCID is maintained nationwide and support emerging opportunities to screen for other types of PI.
Supporting emerging research and therapies
IDF advocates for increased research funding and the removal of barriers to the development and availability of new and emerging therapies to treat PI.
Latest policy resources
Thank you to the following organizations for their support of IDF advocacy programs.
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