Dear Colleagues, Friends, and Supporters,
2005 has been an extraordinary year for lupus. Critical breakthroughs have led to important discoveries in understanding the causative mechanisms of lupus. The Alliance for Lupus Research is pleased that these accomplishments have been made possible in part due to the research funding we have provided.
Pivotal findings have come from investigation linking genes to lupus risk. A research team led by ALR-funded investigator Edward K. Wakeland, PhD, University of Texas Southwestern Medical Center, has found that a cluster of closely related genes (called the SLAM/CD2 gene family) appears to determine susceptibility to lupus. Further, the ALR has continued its commitment to uncovering the mysteries of genetics and lupus through its unprecedented funding of $1.75 million to a lupus consortium in the SLE Genetics (SLEGEN) Initiative. It is anticipated that this study will help researchers to identify the specific gene or genes related to lupus.
Another pivotal issue has been the role certain cells play in the autoimmune response in lupus. Through ALR funding provided this year, Philip L. Cohen, MD, University of Pennsylvania, is exploring the role that defective clearance of normal dead cell debris has in suppressing immune responses. He will study a new therapeutic approach for enhancing clearance of such debris. B cells, a type of white blood cell, have a central role in the development of lupus, and scientists have discovered that B cell depletion may lead to remission in some with the disease. In preliminary work funded by the ALR, Robert Eisenberg, MD, University of Pennsylvania, and John Looney, MD, University of Rochester, helped lay the groundwork for this important linkage. They have subsequently partnered with Genentech, to conduct clinical trials using the B-cell depleting agent rituximab—a drug already FDA-approved for treating certain cancers. If it is proven to work effectively, it could be the first new drug approved for lupus patients in years.
Finally, interferons, important proteins in the immune system, have been linked to lupus risk. It has been noted that lupus patients tend to over-produce this protein. Thus, if the over-production is neutralized, progress of the disease might be neutralized. To further understand and explore this new finding, the ALR conducted a workshop on interferons and lupus. Some of the most respected scientists working in this field presented to the ALR Scientific Advisory Board. ALR-funded researchers currently working in this area include Charles A. Nicolette, PhD, of Argos Therapeutics, Inc., who is developing an antibody that neutralizes interferon-alpha. The hope of course is that this therapy will provide significant relief to lupus patients with far fewer side effects than current treatments.
Indeed, these and many other breakthroughs could lead to significant benefits for people with lupus. We are proud of the new and continuing work of the ALR grantees and pleased that the ALR has been instrumental in accelerating their important research. It has indeed been an extraordinary year—and we look forward to even more good news in 2006. Thank you to everyone involved and to our valued supports for making all this possible.
Joseph Craft, MD
Chair, Scientific Advisory Board
Since its inception, the Alliance for Lupus Research has had great success with our federal government advocacy efforts. We have steadily worked to raise awareness of lupus in Congress, the Administration and Federal agencies and to increase federal funding for lupus research. As with any grassroots effort, it has taken time and commitment from many individuals in building a strong advocacy program. As we begin to see the results of our labor, it’s a good time to share with you just how far we have come.
The ALR has long been an advocate of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the primary funding institute of lupus research at the National Institutes of Health (NIH). In 2003 and 2004, the ALR was instrumental in getting language added to the Committee Report accompanying the Labor, HHS Appropriations bill that directed NIH to fully fund NIAMS. The ALR is also pursuing language in the FY2006 Labor, HHS Appropriations bill urging NIAMS to expand its work in support of the collection of DNA serum, genotyping and subject information from lupus patients, their family members and healthy unrelated controls so that the identification of the relevant genes can be expedited.
In addition to a focus on the NIH, the ALR has sought lupus research dollars from another important body, the Department of Defense (DoD). In 2004, ALR succeeded in getting lupus listed as one of the diseases eligible for funding under the DoD Peer Reviewed Medical Research Program in the DoD Appropriations bill. This is a $50 million competitive grant program which funds only a few diseases each year. Through our work with lupus researchers across the country, we were successful in demonstrating a significant need for lupus research funding by having over 30 applications submitted by some of the top lupus researchers in the country. We have learned that Timothy W. Behrens, MD, of the University of Minnesota, was awarded one of these grants for a study validating biomarkers in lupus. We were pleased that the ALR played an even more significant role in that Dr. Behren’s research is directly related to work funded under his earlier ALR grant on identifying an interferon gene expression signature in SLE.
The ALR will continue to support funding through the DoD Peer Reviewed Medical Research Program, but is also seeking an even larger commitment. For fiscal year 2006, the ALR has been working to secure dedicated or “earmarked,” DoD funding for lupus research. Language has been drafted for inclusion in the appropriations bills, and the ALR has met with several key members of Congress to discuss this proposal.
Through its commitment to increasing the awareness of lupus, the ALR hosted a Congressional Breakfast Briefing on lupus in spring 2005. This event was supported by the Congressional Black Caucus, the Congressional Women’s Caucus and Rep. Edolphus Towns (D-NY). In addition, the ALR recently partnered with the Lupus Research Institute for a Congressional Briefing on Lupus Research and Drug Development and exhibited at the Congressional Black Caucus. At the Caucus, volunteer Dr. Gena Carter was an invited panelist on behalf of ALR at the Healthcare Forum hosted by Congressman John Conyers, Jr. (D-MI).
In spring 2006, the ALR will expand its advocacy program even further. Through the dedication of its volunteers, the ALR will hold its first-ever advocacy day in Washington, DC. This event will allow volunteers from around the country to meet with Congressional staff and Members to promote federal funding for lupus research. We anticipate even further advancement in the recognition and funding of lupus through this effort and look forward to its success.
To read more on the latest in lupus research, click here to download the most recent Lupus Research Update.
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