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.
Health insurance network adequacy and limiting prior authorization requirements are two areas where IDF engages with private and public health insurance providers, as well as policymakers. IDF supports legislation or other policy initiatives to ensure network adequacy in all health insurance plans so that individuals with PI have access to the specialists they need to properly treat their condition. IDF also supports policies to ensure that health insurance prior authorization criteria, standards, and processes are appropriate, fair, streamlined, and transparent.
The ability of health plan provider networks to deliver the right care, at the right time, without enrollees having to travel too far is critical to ensuring good care for individuals with rare, chronic healthcare needs, including individuals with primary immunodeficiency (PI).
A provider network is a group of healthcare providers—such as primary care providers, specialists, hospitals, and labs—that have contracted with a health plan to provide care to its enrollees at negotiated rates, resulting in lower costs to the health plan. To be adequate, a health plan’s network must provide consumers with the right care, at the right time, without enrollees having to travel unreasonably far.
In many health plans, patients who want to avoid paying more out of pocket must see the providers in that plan’s network. But if the network is not adequate, individuals with PI and other chronic conditions will end up either forgoing care or paying more money to see doctors outside of the network. When individuals with PI forgo treatment, they are likely to get sick from infections and may end up in the hospital, potentially risking death and likely costing the healthcare system more.
Insurance companies often require clinicians to justify particular procedures or therapies in a process called prior authorization as a way of ensuring that high-cost interventions are medically necessary before agreeing to pay for them. Before an individual can receive a particular procedure or therapy, their clinician must submit information to the insurance company detailing the patient’s specific need for the procedure or treatment. Once the insurance company has received the clinician’s justification, they will approve the procedure/treatment, and the patient can receive it. Insurance companies apply prior authorization procedures to contain healthcare spending.
IDF supports legislation to limit prior authorization requirements that delay patient access to necessary procedures and treatments. The legislation is aimed at implementing a streamlined and standardized process to submit prior authorization information and aimed at shortening the time between when a patient is prescribed a therapy and when they begin treatment.
When we need policymakers to hear the PI community’s perspective, you will receive an Action Alert by email. Customize each alert with your information and hit send. It's that easy.
Sign up todayIDF’s guide to health insurance for people with PI provides basic information on plan options, the appeals process for denied claims, and a glossary of terms.
Learn about insuranceReceive news and helpful resources to your cell phone or inbox. You can change or cancel your subscription at any time.
The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
Combined Charity Campaign | CFC# 66309