2008: Year of Progress & Hope for a Better Quality of Life for 1.5 Million Americans with Lupus
Posted Jan 28 2009 4:23am
The Lupus Foundation of America, Inc. (LFA) is pleased to report continuing progress was achieved in 2008 in efforts to combat lupus, a chronic autoimmune disease which affects an estimated 1.5 million Americans and at least five million people worldwide. Teams of researchers announced important findings which provided clues to the underlying genetic origins of lupus, several companies released clinical data on studies of potential new treatments, and Congress reaffirmed its commitment to provide greatly expanded federal support for lupus research and education programs.
Multiple studies provided insight into new ways to manage and treat lupus, and prevent its often-devastating consequences. National media coverage of lupus continued to rise and, and work neared completion on the first-ever Advertising Council national lupus public education campaign, scheduled to launch in early 2009.
Public and Private Support for Lupus Research and Education Grows
The largest sources of funding for lupus research are the federal government and the pharmaceutical and biotechnology industries. In 2008, the LFA worked with elected officials and industry leaders to further expand investment in research on lupus, while the Foundation expanded the scope of its own lupus research program.
Congress appropriated millions of dollars in FY 2009 for lupus research and education programs funded through the Department of Health and Human Services, National Institutes of Health, Centers for Disease Control and Prevention, and Office on Women’s Health, and the Department of Defense’s Peer Reviewed Medical Research Program.
Private funding for lupus research also grew in 2008, as evidenced by the growing number of clinical research studies to test potential new, safe and effective treatments for lupus by pharmaceutical and biotechnology companies. Several companies announced preliminary data from their clinical studies. While some trials did not reach targeted endpoints, data gathered from these studies provide insight into possible new ways to design clinical trials and select patients for studies.
The LFA in 2008 provided another $1.1 million to support its own national research program, “Bringing Down the Barriers.” To date, the LFA and its chapters have provided more than $20 million to support approximately 400 investigators at 100 academic and scientific institutions. The LFA has greatly expanded the scope of its program to support research initiatives in novel pilot approaches, pediatric/adolescent lupus, lupus in males, mid-to-late stage translational research, and studies on the use of adult stem cells in lupus.
Although a number of scientific challenges lay ahead, developments in 2008 brought renewed hope that a better quality of life for people with lupus and their families is possible within the not too distant future.
The LFA has compiled a list of ten important advances in lupus research and education that occurred during 2008. They are as follows:
#1 - Researchers Identify Genes Linked to the Underlying Causes of Lupus
International teams of investigators identified four new genes that are strongly associated with lupus, and ten others that are possible risk factors. A second research team identified regions on two chromosomes that may contribute to individuals being predisposed to lupus. The findings may one day make it possible to identify who may be at risk for lupus and prevent its consequences.
# 2 - Congress Provides Millions of Dollars for Lupus Research and Education
The U.S. Congress provided another $3.1 million to fund lupus epidemiological research through the Centers for Disease Control and Prevention (CDC) for the National Lupus Patient Registry. Congress also authorized funds to support studies on lupus and lupus biomarkers through the Department of Defense Peer Reviewed Medical Research Program. This initiative has provided more than $6 million for lupus research. Additionally, Congress provided funding for the National Institutes of Health (NIH), which provided an estimated $84 million for lupus research in 2008.
#3 - Industry Expands Efforts on Drug Development Providing Hope for Better Quality of Life
Biotechnology and pharmaceutical companies stepped up efforts in 2008 to develop new treatments for lupus, with several releasing data on clinical studies of potential new treatments. Companies working to develop new therapies for lupus include Amgen, Bristol-Myers Squibb, Dynavax/GalxoSmithKline, Genelabs Technologies, Genentech/Biogen Idec, Hoffmann-La Roche, Human Genome Sciences/GlaxoSmithKline, La Jolla Pharmaceutical Company/BioMarin, MedImmune/AstraZeneca, Merck Serono, Roche Pharmaceuticals, UCB, Vifor Pharma/Aspreva Pharmaceuticals, and Wyeth Pharmaceuticals.
#4 - LFA Establishes the Michael Jon Barlin Pediatric Research Program to Address Specialized Issues Related to Lupus in Children, and Expands the Scope of its Lupus Research Program
In 2008, the LFA became the only national voluntary health organization with a research program specifically dedicated to studies on lupus in children when it launched the Michael Jon Barlin Pediatric Research Program. The LFA awarded $1.1 million in research grants and fellowships last year to advance the science of lupus by supporting studies in novel pilot approaches, pediatric/adolescent lupus, lupus in males, and mid-to-late stage translational research. Additionally, LFA supported studies on stem cell research, cutaneous (skin) lupus, kidney disease and lupus, and the neuropsychiatric effects of lupus, and awarded five student summer fellowships to foster an interest in the field of lupus research.
#5 - Study Data Provides Evidence of New Benefits for Existing Lupus Treatments
Clinical research data released in 2008 showed that lupus patients treated with hydroxychloroquine, used most often to treat lupus skin and joint problems, were less likely to have kidney disease, had less severe disease, and required lower doses of corticosteroids than patients who did not receive the drug. Another study showed that two therapies, mycophenolate mofetil (MMF) and intravenous cyclophosphamide (IV CYC) appeared to be safe and effective for treatment of lupus nephritis (LN) in adolescents.
#6 - Studies Provide Hope and Tools for Successful Lupus Pregnancies
Researchers found a relationship between the levels of a protein called sFlt-1 and preeclampsia in pregnant women with lupus, allowing for earlier management and monitoring by specialists in high-risk obstetric care. Preeclampsia is characterized by high blood pressure and large losses of protein in the urine and is dangerous for both the mother and the baby. Another study found intravenous immunoglobulin infusion (IVIg) to be safe and effective for women with lupus who had consecutive miscarriages.
#7 - Second International Conference on Lupus Flares Addresses Gaps in Clinical Research
More than 80 international scientific thought leaders in lupus continued their work in 2008 to address an important gap impeding lupus drug development and approval during the Second International Conference on Lupus Flares organized by the LFA. Experts discussed modifications to tools used to monitor disease activity and progression. They also worked to finalize a consensus definition of a lupus flare. The number of flares and time to flare can be used as primary endpoints in clinical studies; however, presently there is no accepted definition of a lupus flare.
#8 - LFA Launches Center for Clinical Trials Education (CCTE) to Educate People Interested in Lupus Clinical Studies
The LFA launched the Center for Clinical Trials Education (CCTE) as a resource for people with lupus and their families who are considering participation in a clinical trial. The CCTE website ( www.lupus.org/clinicaltrials ) serves as a national clearing house of information specific to lupus clinical trials and volunteer participation. The website includes a lupus trial-locating service and provides information about clinical trials in English and Spanish tailored to various populations of people with lupus.
#9 - Lupus Advocates Generate Increased Attention and Resources for Research and Education Programs
More than 300 individuals with lupus, their families, and health professionals from 37 states came to Washington as part of the LFA’s Tenth Annual Advocacy Day and met with 200 Members of the United States Congress and staff members. In 2008, Congress provided support for legislative priorities advocated by the LFA, including expanded funding for lupus research and education programs.
#10 - Public Awareness Initiatives Improve Understanding of Lupus and its Impact on Individuals and Families
The LFA was named the Founding Partner with the U.S. Department of Health and Human Services Office on Women’s Health (OWH) on the first-ever Advertising Council national lupus public awareness campaign, which is scheduled to launch in early 2009, reach an estimated 100 million U.S. adults, and generate $30-$50 million annually in free media exposure for lupus. Media coverage for lupus in 2008 included a feature on lupus as part of a week-long series about chronic diseases broadcast on NBC Nightly News. ABC News Now, CNN, and Accent Health also produced feature reports on lupus.