Lupus Groups to Host Patient-Focused Drug Development Meeting

A patient-centered lupus drug development meeting, “Lupus: Patient Voices”, will be held in spring 2017.

The Alliance for Lupus Research (ALR), the Lupus and Allied Diseases Association (LADA), Lupus Foundation of America (LFA), and the Lupus Research Institute (LRI) will organize the event that will focus on patient viewpoints, daily impacts of the disease, and comments about current drug therapies.

Lupus is a chronic autoimmune disease characterized by inflammation and tissue damage that affect any organ system in the body. The health impacts of lupus may include heart attacks, strokes, seizures, organ failure, and other serious complications. The disease can be life-threatening. The most conservative estimates report nearly 322,000 Americans have a definite or a potential diagnosis of lupus. Independent surveys suggest that about 1.5 million people may actually have the disease.

The “Lupus: Patient Voices” initiative will culminate with a meeting featuring panel discussions designed to provide the U.S. Food and Drug Administration (FDA) with fresh perspectives from lupus patients, advocates, and caregivers. The four organizations answered the FDA’s call for groups to host the meeting officially dubbed the Patient Focused Drug Development (PFDD) meeting.

According to a press release, the meeting will provide the lupus community with a platform to share insights with the FDA and help the process of developing potential new treatments for the damaging disease.

The PFDD model has been successful in past years.

The day will focus mainly on spotlighting patient viewpoints on the disease; covering the symptoms and challenges to daily life that are most critical for lupus patients; and listening to opinions on existing and future treatments. The input is expected to help the FDA make better, more informed decisions and to help the oversight process during drug development and review of marketing applications.

The four lupus organizations will begin to gather input from lupus patients nationwide in fall 2016 via surveys and personal stories. Details about how lupus patients can participate will be announced at a later date.