Eosinophilic & Rare Disease Cooperative (ERDC) Engages National Effort to Strengthen Research, Protect Incentives, and Improve Access to Rare Disease Treatments
FOR IMMEDIATE RELEASE
Grand Rapids, MI — February 26, 2026 — Eosinophilic & Rare Disease Cooperative (ERDC) is playing a pivotal role in advancing policies that improve medication research, development, and real-world access for people living with rare diseases.
Serving individuals and families affected by more than 40 rare diseases — with a primary focus on vasculitis (including GPA, MPA, and EGPA), myasthenia gravis, and IgG4-related disease (IgG4-RD) — ERDC has engaged in dozens of meetings with state and federal legislators to share the personal journeys of patients navigating complex, often life-threatening conditions.
Through these meetings, ERDC has underscored the devastating consequences of failing to ensure access to medications specifically indicated for rare diseases. Patients have described irreversible organ damage, prolonged hospitalizations, disability, and significant loss of quality of life when effective therapies are delayed, denied, or unavailable.
ERDC’s advocacy spans the entire access continuum — from research incentives to insurance coverage — because access does not begin at the pharmacy counter; it begins in the laboratory.
“When there are no medications being researched, it does not matter how much they cost — they will not exist,” said Pam Squires of ERDC. “And when therapies are available but blocked by the shenanigans of health insurance companies and pharmacy benefit managers (PBMs), it does not matter that they are FDA-approved. If patients cannot access them, they might as well not exist. We are focused on every step — from incentivizing research to having medications and treatments in our hands.”
Protecting Rare Disease Research Incentives
ERDC has been a strong voice in supporting policies that sustain and strengthen rare disease innovation, including:
- Priority Review Voucher (PRV/PPRV) Programs: Incentive mechanisms that encourage companies to invest in treatments for small patient populations where traditional market forces may not justify development costs.
- The Orphan Drug Act and the Orphan Cures Act: Policies designed to preserve and strengthen incentives for developing therapies for rare diseases, ensuring that patients with ultra-rare and medically complex conditions are not left behind.
ERDC has emphasized to lawmakers that weakening or failing to modernize these incentives risks slowing — or stopping — research into life-saving treatments for rare conditions such as GPA, MPA, EGPA, myasthenia gravis, and IgG4-RD.
Ensuring Real-World Access: Addressing PBM and Insurance Barriers
Beyond research, ERDC actively addresses systemic barriers that prevent patients from accessing therapies. The organization has advocated for greater oversight and transparency of Pharmacy Benefit Managers (PBMs), whose formulary exclusions, step therapy requirements, prior authorizations, and non-medical switching policies often delay or deny access to specialist-prescribed medications.
ERDC welcomes the recently passed PBM reform legislation as a critical step toward increasing accountability and transparency in the prescription drug supply chain. However, ERDC stresses that reform must translate into measurable improvements for patients facing urgent medical needs.
For rare disease patients, treatment delays are not administrative inconveniences — they can mean permanent organ damage, disease progression, or loss of function. They can mean death.
“Patients with rare diseases already fight their bodies every day,” Squires added. “They should not also have to fight their insurance company to receive the exact medication their specialist prescribed. Availability on paper is meaningless without access in reality.”
A Comprehensive Commitment to Access
ERDC’s work focuses on all aspects of access, including:
- Preserving and strengthening research incentives (PRV/PPRV, Orphan Cures Act)
- Supporting robust rare disease clinical research pipelines
- Protecting FDA-approved indications from coverage erosion
- Advancing PBM and insurance reform
- Addressing cost-shifting and medical debt resulting from 340b abuses
- Raising awareness about unintended consequences of Most Favored Nation programs like GLOBE and GUARD
- Amplifying patient personal journeys to inform policy decisions
ERDC remains steadfast in its mission: to ensure that individuals living with rare diseases not only see therapies developed — but can obtain them without unnecessary delay or obstruction.
About ERDC
Eosinophilic & Rare Disease Cooperative (ERDC) is a patient and care partner run organization serving individuals and families affected by more than 40 rare diseases, with a primary focus on vasculitis (GPA, MPA, EGPA), myasthenia gravis, and IgG4-related disease (IgG4-RD). ERDC works to provide meaningful resources like disease-specific Hospital Emergency Advocacy & Treatment Kits (HEAT Kits), improve access to quality care and ensure equitable access to safe and effective treatments.
