Lupus Research Institute on Hill Yesterday Advocating for Professional Training on Lupus

Need for Widespread Education Confirmed by New Survey of Patients and Caregivers

Mar 21, 2012, 16:27 ET from Lupus Research Institute

WASHINGTON, March 21, 2012 /PRNewswire/ -- The Lupus Research Institute Coalition of patient advocacy groups throughout the country were out in force on Capitol Hill yesterday to bring critical issues affecting the 1.5 million lupus patients nationwide to the attention of Congressional leaders. Stressing the need for increased public and professional education on lupus was validated by findings of a new survey released Tuesday showing a communication gap between patients and those who care for and about them.

Survey Shows Lack of Communication Affecting Care

The survey of nearly 1,000 people, including those diagnosed with lupus, supporters of people with lupus and rheumatologists—showed that lupus patients often downplay pain and other symptoms to their physician and family and friends. Eighty-seven percent of those diagnosed with lupus report playing down symptoms to their families, and 52 percent said they minimize symptoms to their physician. Yet, almost three-fourths (72 percent) of physicians surveyed did not believe their patients minimized symptoms. The survey was conducted by research firm Roper on behalf of Human Genome Sciences and GlaxoSmithKline.

Closing the Gap

"We are seeking further Congressional support for adequate training of healthcare professionals to better recognize, diagnose and treat lupus," noted Margaret Dowd, President of the LRI.  "The survey confirmed the need for greater professional understanding of the disease. Also, the LRI is urging every member of Congress to join the new Congressional Lupus Caucus to raise awareness of lupus among patients, their caregivers, healthcare professionals and researchers. The more people know about lupus, the quicker symptoms are recognized and the more effective the treatment."

Beyond advocacy, LRI Coalition members help empower lupus patients to manage their disease proactively and communicate symptoms and side effects to those involved in their care. Coalition members throughout the country regularly work with patients to address barriers to patient-provider communication at support groups and other programs.  

In addition, respondents expressed a need for additional patient resources. The LRI urges people with lupus and their families to visit or email Diane Gross, MPH at to learn how to access available resources throughout the country. The LRI Facebook page provides an active forum where lupus patients speak out and share their experiences and can pose questions for our staff.

About Lupus

A complex autoimmune disease, lupus affects over 1.5-million Americans, primarily women.

About the Lupus Research Institute

The Lupus Research Institute (LRI), the world's leading private supporter of innovative research, pioneers discovery and champions scientific creativity to find solutions to lupus.

SOURCE Lupus Research Institute