Future Treatments for Rare Organ Disease Raise Hope, New Paper Explains

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Feb 29, 2024, 09:00 ET

Physicians describe patients' years of inaccurate diagnoses and off-label treatment, look toward forthcoming FDA approvals

WASHINGTON, Feb. 29, 2024 /PRNewswire/ -- IgG4-RD patients may finally have a treatment developed specifically for their condition, explains a clinician-authored white paper from the Alliance for Patient Access. "Addressing Access Barriers for IgG4-RD Patients" highlights that the rare condition has flown under the radar for many years and a treatment for IgG4-RD is sorely needed. Increasing awareness, thankfully, is leading to more correct diagnoses, greater social support and innovative options.

Alliance for Patient Access logo. (PRNewsfoto/Alliance for Patient Access)

As treatments tailored to these patients finally emerge, patients, providers and advocates must still overcome a number of challenges:

Low awareness & knowledge gaps
Physician availability
Utilization management barriers

Policymakers can play a key role in protecting patient care by implementing policies that tackle utilization management barriers and ensure new treatments are accessible.

Paper Authors

J. Eugene Huffstutter, MD, MACR
Arezou Khosroshahi, MD
Mark A. Matza, MD, MBA
Alireza Meysami, MD, CPE, FACR, FACP
Christopher Parker, DO, FACP, FACR
John H. Stone, MD, MPH
Zachary S. Wallace, MD, MSc
David C. Whitcomb, MD, PhD, FACP, FACG, AGAF

About IgG4-RD

IgG4-RD is a rare disease caused by an abnormal accumulation of immune cells that produce an antibody called IgG4. The disorder can disrupt a patient's immune system and cause tumor-like masses, ultimately leading to severe organ damage.

This rare condition is typically treated with off-label medications, but innovative treatments are being developed specifically for IgG4-RD. Getting the right treatment in a timely manner is crucial to effectively managing the condition.

STATEMENT FROM JOSIE COOPER, EXECUTIVE DIRECTOR OF THE ALLIANCE FOR PATIENT ACCESS: Patients with IgG4-RD deserve care tailored to their rare disease. The future of innovative options for these patients is exciting, but we must continue to fight for access to these life-changing medications as they become available.

Learn more by reading "Addressing Access Barriers for IgG4-RD Patients."

About the Alliance for Patient Access

The Alliance for Patient Access is a network of policy-minded health care providers who advocate for patient-centered care.

SOURCE Alliance for Patient Access