Lupus Foundation of America’s 2011 Top Ten Achievements for Lupus Research, Education and Advocacy
The Lupus Foundation of America (LFA) is celebrating a year of historic lupus firsts generated during 2011 that have contributed to advances in the science and medicine of lupus, improved awareness of the disease, and heightened understanding of lupus and its impact.
#1–First Lupus Treatment Approved in More than 50 Years
After waiting more than five decades, people with lupus applauded the U.S. Food and Drug Administration’s decision to approve BENLYSTA®, the first drug ever developed specifically to treat lupus. Benlysta is the first entry in what is expected to become an arsenal of new, safe, effective, and tolerable lupus treatments.
#2–Lupus Flare Defined, Published Provides Valuable Tool for Clinicians and Investigators
The journal LUPUS published the first-ever global definition of a lupus flare, the Lupus Foundation of America Flare Definition (LFA-Flare). The flare definition was the result of a four-year worldwide initiative lead by the LFA involving more than 120 lupus experts from 11 countries, the pharmaceutical and biotechnology industries, and federal agencies. The definition will provide a valuable tool for evaluating the effectiveness of potential new treatments for lupus.
#3–Analysis Takes Tough Look at Why Treatment Trials Fail
The LFA released early data from the first-ever study to use pooled data from industry-sponsored lupus treatment trials. The findings showed that background medications taken by individuals enrolled in these trials greatly impacted trial outcomes. The initial conclusions were presented to lupus clinicians and researchers during the American College of Rheumatology Annual Scientific Meeting, and to an elite group of researchers at a landmark meeting on lupus biomarkers sponsored by the Food and Drug Administration. The LFA initiative, known as the LFA Collective Data Analysis Initiative (LFA-CDAI) seeks to provide insight and identify trends from previous lupus clinical trials in an effort to improve the design of future trials required to build a full arsenal of new therapies for lupus.
#4–More than 20,000 People Unite to Further Lupus Clinical Studies
The LFA Center for Clinical Trials Education (LFA-CCTE) served as a resource for more than 20,000 people interested in lupus clinical trials and helped connect potential volunteers with studies in their areas. Approximately 500 volunteer opportunities at nearly 30 different clinical studies were available across the United States during 2011, demonstrating expanded efforts by industry, academic and medical institutions, and clinicians to help provide more lupus treatment options.
#5–Research Discovers More People Have Lupus than Previous Estimates
Early data from the Georgia Lupus Registry (GLR) indicates higher overall prevalence of lupus and a significantly higher incidence of lupus among black women than has been reported previously in the scientific literature. The GLR is part of a broader national epidemiological study on lupus that has received more than $18 million in federal funding as a result of LFA advocacy efforts.
#6–Lupus Flares Infrequent During Pregnancy for Most Women with Stable Lupus
Women with lupus who are considering becoming pregnant received reassuring news from a large study which found that most women with stable lupus or only mildly active disease experienced infrequent flares during their pregnancies and delivered healthy babies. This study is significant since lupus predominately develops among young women of childbearing age.
#7–Lupus Voices Captures National Spotlight as Part of Multimedia Outreach Efforts
The LFA launched Lupus Voices Across America™, a new Web-based community for people with lupus to share what they want the public to understand about lupus. Celebrities such as Julian Lennon, Eduardo Xol, Busy Philipps, Kalenna Harper, Chris Wilcox, and Whoopi Goldberg also helped LFA efforts by educating their fans about lupus. Their support helped generate record visits to the LFA’s lupus.org Web site during Lupus Awareness Month in May. Traffic to lupus.org approached four million visits during 2011, placing it among the top disease-related sites on the Internet. In addition, The Ad Council reported that total donated media for the national lupus awareness campaign, “Could I Have Lupus?” surpassed $67 million in 2011. In all, LFA media outreach during 2011 generated nearly 100 million impressions.
#8–Critical Research Studies Help to Advance the Science and Medicine of Lupus
In 2011 the LFA supported lupus research studies in critical areas, includingcutaneous (skin) lupus, pediatric lupus, stem cell transplantation, and neuropsychiatric lupus (affecting the brain and nervous system).The LFA also led efforts to help secure millions of dollars in additional federal and state funding to support studies on lupus, including work supported through the National Institutes of Health, the largest single source of funding for lupus research. LFA efforts also included helping secure an additional $4 million during 2011 for lupus studies funded through the Department of Defense Peer Reviewed Medical Research Program and the U.S. Centers for Disease Control and Prevention.
#9–Lupus Information Provided to More than 200,000 Individuals
The LFA and its national network assisted approximately 200,000 individuals by providing information about lupus, referrals to physicians, and support services. The LFA also debuted new educational materials, produced audio podcasts about lupus research, sponsored teleconferences and symposia on living with lupus, and published LUPUS NOW®, the only national magazine focused exclusively on lupus.
#10–LFA-Funded Research Presented at 2011 ACR National Meeting
Data from several studies funded by the LFA’s National Research Program were presented during the 2011 American College of Rheumatology Scientific Meeting, including research on male lupus, pediatric lupus, quality of life issues, lupus diagnostic criteria, lupus biomarkers, and neuropsychiatric lupus. The studies are critically important to advancing the science and medicine of lupus, and improving the quality of life for individuals affected by this unpredictable and potentially life-threatening autoimmune disease.