The American College of Rheumatology’s (ACR) The Lupus Initiative (TLI) has awarded a one-year, $500,000 grant from the Office of Minority Health (OMH) to expand its established, national education program with development of an evidence-based program model aimed at improved health outcomes for people with lupus living in rural and underserved areas.
The Lupus Initiative is a multi-faceted education program led by the American College of Rheumatology that provides medical professionals, educators, and students with evidence-based programs and easy-to-use educational resources to ensure the early and accurate diagnosis, effective treatment and management of patients with lupus, regardless of age, gender, race, ethnicity or socioeconomic status, so that they may potentially lead healthier lives.
The initiative is designed to reduce health disparities experienced by patients battling this serious, complex chronic autoimmune disorder, The Lupus Initiative develops educational resources for students and practitioners of medicine and the health professions — CME activities, case studies, a curriculum on lupus and health disparities, communication tools and more — to assist, support, and educate health providers in diagnosing, treating, bringing specialty care, and managing patients disproportionately affected by lupus based on race, ethnicity, and gender.
“TLI is committed to developing a scalable and sustainable program model that can be replicated by other organizations for lupus and other diseases,” says Sheryl McCalla, JD., MS, TLI Project Director and ACR Senior Director, Collaborative Initiatives in a release. “We believe the approach TLI is developing will help bring clinically, culturally, and linguistically competent lupus care to underserved rural and micropolitan communities across America.”
Lupus is a severe and disabling systemic and chronic autoimmune disorder of unknown etiology in which various cell types and immunological pathways become dysregulated, allowing the immune system to dysfunctionally produce antibodies to cells within the body that attack and destroy healthy tissue. Lupus symptoms include pain, swelling and inflammation, and damage to joints, skin, blood, heart, brain, kidneys, lungs, bones, central nervous system and the hematological system, Typically affecting many parts of the body, and can cause severe complications that make aggressive therapies obligatory.
The Lupus Foundation of America estimates that based on its research at least 1.5 million Americans have lupus, but that the actual number may be as high as 2 million or more, since there have been no large-scale studies to determine the actual number of people in the U.S. living with lupus. More than 16,000 new cases of lupus are reported annually across the country, representing a huge unmet medical need, with only one new treatment having been approved by the FDA in the past 50 years and patients obliged to struggle to draw attention to their disease.
Ultimately, TLI says it aims to develop an evidence-based program model that can effectively address barriers that exist to diagnosis, treatment, and disease management for minorities impacted by lupus, often due to limited access to lupus educational curricula tools and resources that currently exist among practicing health professionals.
“To accomplish this, TLI will work collaboratively within an established national network of agencies and organizations Ms. McCalla explains. “The model will allow for primary care providers to treat a person with lupus on their own, or co-manage with a geographically-distant rheumatologist, until an appropriate referral can be made. Additionally, we will focus on increasing the awareness of the people in these silent spaces about lupus signs and symptoms.”
“This model will be the first of its kind to establish a method to penetrate the most difficult to reach, but most affected, populations: African Americans and American Indian/Alaska Native communities in rural and micropolitan areas of the U.S. where there is a shortage of rheumatologists, says Sam Lim, MD, MPH, an Associate Professor of Epidemiology and Rheumatology at Emory University School of Medicine, Chief of Service for Rheumatology at Grady Memorial Hospital, and a nationally recognized lupus expert.
“I am interested in autoimmune conditions that disproportionately afflict ethnic minorities, in particular lupus,” Dr. Lim notes. “Ninety percent of persons with lupus are women, and blacks/African-Americans are affected three times more than whites.
Lupus primarily affects women of childbearing age (ie: between 20 to 40), and women of color are two to three times more likely to develop Lupus than Caucasians. However, men, children, and teenagers and people of all races and ethnic groups can develop Lupus. Other risk factors include exposure to sunlight, some prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.
Dr. Lim is involved in several research projects that seek to understand the epidemiology and outcomes of systemic lupus erythematosus, particularly as it impacts lower socioeconomic African-Americans. He hopes to continue this research program by furthering the success of the Georgia Lupus Registry and Grady Lupus Clinic. He is the principal investigator of the CDC-funded Georgia Lupus Registry and of several lupus clinical trials, as well as involved in teaching courses for 2nd and 3rd year medical students particularly on lupus related topics.
“Lupus can be a debilitating, chronic illnesses but it could be managed if resources were available,” Dr. Lim observes. “TLI will establish an evidence-based model that other organizations, communities, and agencies can replicate to deliver provider education and access to care for patients in need.”
TLI will be expanding on its existing partner organization infrastructure, resulting in one of the largest, national formal collaborations of lupus stakeholders.Collaborative partners for the current grant include the following stakeholders:
Alaska Native Tribal Health Consortium
Emory University School of Medicine
Georgia Charitable Care Network
National Association of Chronic Disease Directors
Southwest Georgia Area Health Education Center
Oregon Area Health Education Center
Morehouse School of Medicine
The Lupus Initiative is funded in part by a grant from the U.S. Department of Health and Human Services through its Office of Minority Health, and is guided by experts in medicine, public health, academia, research, patient advocacy, and health disparities. For more information about The Lupus Initiative, visit:
For more information about the American College of Rheumatology visit:
American College of Rheumatology
The Lupus Initiative
The Lupus Foundation of America
Emory University School of Medicine
Grady Memorial Hospital