AVOIDING MISSED OPPORTUNITIES IN LUPUS RESEARCH

FEATURING: Diane Kamen, MD, MS, Associate Professor of Medicine in the Division of Rheumatology, Medical University of South Carolina, Charleston, South Carolina

 

A DISEASE WITHOUT KNOWN CAUSE OR CURE

Lupus strikes without warning, affects each person differently and has no known causes or cure. It is a chronic autoimmune disease in which the immune system becomes imbalanced and fails to distinguish between foreign invaders like viruses or bacteria and healthy tissues and organs. While as many as 1.5 million people in the United States suffer from lupus, research on the disease has remained underfunded relative to its scope and devastation. 

Dr. Diane Kamen of the Medical University of South Carolina is investigating whether microbes in the gut are capable of contributing to the development of lupus in African Americans with a genetic predisposition for the disease. Her work is being supported by the Lupus Foundation of America's Lifeline Grant Award, which provides funding to support lupus researchers who are experiencing a gap in external funding for a previously funded study due to decreased availability of federal support. The award is intended to keep an investigator’s project on track while he or she applies for larger federal grants.

While the causes of lupus are unknown, it is suspected that environmental factors play a role. Dr. Kamen and her fellow researchers have been following a community of African American patients of Gullah descent since 2002 and began visiting with them in 2003. Lupus is prevalent in the community and tends to manifest earlier with more severe involvement. Over the years, the team has collected family histories, DNA, samples for genetic and other biomarker research and observed environmental factors.

“We’re focusing on diet and the microbiome in the gut. We actually think that those play a role in the development of autoimmunity,” said Dr. Kamen. “There’s some early evidence that it’s not just certain bad bacteria but that we’re losing the diversity of bacteria and microbes in the intestinal tract.”

The new focus on gut bacteria in addition to genetic factors has received support from the community Dr. Kamen and her team have been studying. Trust has built up between the researchers and their patients over years of interaction that they hope to take advantage of when looking at the question of how much of autoimmune disease is caused by genetics and how much is environment. 

“It’s a prime opportunity to build on that momentum and the relationship we have with the community. They absolutely agree that there’s something to this. They say, ‘I have always thought it was something in our guts.’”

FUNDING CUTS, PROGRESS SLOWED

When a project doesn’t receive enough funding, researchers spend more hours in clinical practice instead of devoting themselves to the research at hand. Coordinators and assistants can’t be paid and many end up moving on to different projects or leaving research altogether. Additionally, the community that was once excited about the research may lose interest if they feel things aren’t progressing.  Though the Lupus Foundation of America provides critical bridge funding for researchers in lupus, cuts to the National Institutes of Health (NIH) have substantially slowed the research community’s ability to follow promising leads, potentially transforming our understanding of this disease.

“Everyone was excited to start, but we didn’t have the funding in that moment to embark. You want to come in when the iron is hot. We know the community wants us to do these studies. The longer you wait, the more frustrated the community gets. A lack of funding might delay us a year or two, but it’s not just a delay. We might lose the trust and confidence from the people we’re studying.”

AUTHOR
Lupus Foundation of America