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The Immune Deficiency Foundation (IDF) advocates for policies that ensure private insurance, Medicare, Medicaid and exchange plan specialty networks are adequate to meet the needs of the primary immunodeficiency (PI) community.

What Is Network Adequacy?

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 diseases (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 having to travel unreasonably far.

What Happens when a Network Is Not Adequate?

In most health plans, patients who want to avoid extra fees besides the standard deductible, co-payment, or coinsurance 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.

Legislative Advocacy

IDF engages in state advocacy in support of 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.