A Patient’s Voice in Lupus Research

LRI Advocate Vera Santeramo is Directly Shaping the Course of Government Research Funding

When it comes to lupus research, supporters from countless corners of the nation clamor to be heard.

As a champion of the LRI, you can be assured that those who see novel research as key to a better future are sounding out—and being heard.

Here’s one way it happens.

Vera Santeramo, lupus advocate
Vera Santeramo of Rockville Centre, New York, knows lupus; not only has she struggled with the autoimmune illness for nearly three decades, but she has served as a passionate advocate for research and services that might benefit the approximately 1.5 million other Americans with this illness.

In 2008, the LRI nominated Vera to serve as a “consumer reviewer” for scientific lupus proposals submitted to the Department of Defense “Peer Reviewed Medical Research Program.” That year, the research program received $50 million in appropriations to fund research in 21 research topic areas—including lupus.

Vera helped to determine which ones got picked.

“In early 2009, the American Institute of Biological Sciences asked me to serve again,” she reported recently. “I said yes!”

What It Means

The goal of this unique program is to find and fund the best and most novel research to eradicate lupus and other diseases.

As one of three “consumer” voices for the lupus community—reviewers are selected after submitting a personal essay and undergoing a telephone interview with the U.S. Army Medical Research and Material Command—Vera met with leading scientists and clinicians from major institutions and universities to review, evaluate, and score numerous lupus research proposals.

The three to five full days of intense pre-meeting preparation, including analyzing and commenting on approximately 15 assigned proposals, represented a chance for scientists and consumers to collaborate and learn from each other.

Throughout, Vera kept her eye on the research proposals that she felt would have a true impact on the lupus community.

“I brought my unique perspective to the forefront of scientific discussions,” Vera explained, “to assess the pros and cons of various proposals on the participant’s safety, medical care and quality of life and whether such study addressed a pressing, lupus concern.”

Again in 2009

Reflecting on the experience, Vera said “I was thrilled to share my experiences and concerns with the esteemed panel with which I worked, and humbled to hear from several reviewers that my insights made a tangible and positive difference.”

She will head to Washington, D.C., in the summer of 2009 to review another round of proposals.

“I am more hopeful than ever, after learning about the many novel lupus research studies. And I also believe that, in the not so distant future, we should be able to declare a victory on the “war against lupus!”

NOTE: In 2007, Vera shared her thoughts on the pros and cons of joining a clinical trial, and what prompted her to eventually do so. Read it here.