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.
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.
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.
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.
The Immune Deficiency Foundation (IDF) is happy to announce that yesterday, New Jersey Governor Phil Murphy signed legislation to help the state’s families by making it easier for individuals who depend on expensive prescription drugs to afford their healthcare. IDF is proud to have been a member of a coalition of organizations representing patients and healthcare providers that supported and advocated for this legislation.
Starting next year, health insurers in New Jersey will be required to offer plan options that cap out-of-pocket drug costs at $150 to $250 per prescription, per month. Unlike similar legislation in other states, New Jersey's law is the first in the country to cap drug costs even before an individual meets their insurance deductible.
Individuals, like those with primary immunodeficiencies (PI), facing extremely high out-of-pocket prescription costs are often forced to go deep into debt just to access the treatment they need. Some even forego needed treatment because they simply cannot afford it. According to IDF’s 2014 Health Insurance Survey of persons with PI, approximately one-third (1/3) of respondents reported that they had skipped treatments for reasons including an inability to afford the out-of-pocket costs required by payers. They literally put their lives at risk because they couldn’t afford the high cost of their treatment. Starting in 2021, this bill will allow New Jersey residents, like those with PI, the option of choosing a plan that helps them manage those costs.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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