Senators, Autoimmune Groups Host Briefing on Autoimmune Disease; Urge Funding of Landmark NIH Autoimmune Disease Research Plan 3/25/2004
From: Stephanie Tonnesen of Carway Communications Inc., 212-378-2020 WASHINGTON, March 25 -- U.S. Senators and the National Coalition of Autoimmune Patient Groups (NCAPG), including the American Autoimmune Related Diseases Association (AARDA), today called on Congress to provide $450 million dollars annually to fund the National Institutes of Health (NIH) Autoimmune Disease Research Plan. The group urged Congress to fund the 2003 research plan at a Capitol Hill briefing hosted by Senators Joseph R. Biden, Jr. (D-Del.), Thad Cochran (R-Miss.), Tom Harkin (D-Iowa), Daniel Inouye (D-Hawaii), Richard Shelby (R-Ala.), Arlen Specter (R-Pa.) and John Warner (R-Va.). Key scientific experts and patient advocates detailed elements of the research plan and the short- and long-term benefits it could bring to the millions of Americans and their families who suffer from autoimmune disease. "Why is there such urgency to fund this research plan? Autoimmune disease strikes some 50 million Americans, is one of the top 10 leading causes of death in children and women age 65 and younger, and represents nearly $100 billion in annual direct health care costs," said Virginia Ladd, executive director, AARDA, who served on the expert panel that developed the plan. "This is nothing short of a major crisis in American health care and the time has come for us as a nation to commit the dollars that will allow for full implementation of the plan." Other speakers at the briefing included: -- Dr. Stanley M. Finger, chairman, AARDA -- Liane Mark, Miss Intercontinental 2002 -- Dr. Noel R. Rose, chair, NIH Autoimmune Diseases Coordinating Committee -- Katherine Hammitt, NCAPG Coordinator and Sjogren's Syndrome Foundation -- Patient Voices from NCAPG members The NIH plan, which utilizes a comprehensive multi-discipline, multi-agency approach, is a landmark for autoimmune disease research. It marks the first national coordinated, collaborative effort to study the cause, incidence, diagnosis and treatment of autoimmune disease, as well as educate the medical community and general public. Created at the request of Congress as part of 2000's Children's Health Act, the plan tackles autoimmunity from four key areas, including: Burden of Autoimmune Diseases -- This encompasses the multiple ways in which autoimmune disease affects patients and their families, as well as the public-at-large. Specifically, studies will be undertaken that determine incidence (how quickly new cases occur relative to population size and passage of time); prevalence (the ratio of all existing cases of autoimmune disease within a population at a specified time to the number of persons in the population); morbidity (the stages of the disease and the severity and impact of the disease on the afflicted); and, mortality (number of deaths caused by autoimmune disease). Cause of Autoimmune Diseases -- By studying the cause (etiology) of autoimmune diseases, new prevention strategies and more effective, targeted treatments can be developed. Initially, researchers will work to identify genetic factors that influence autoimmune diseases; identify environmental factors and then determine the relationship between the environmental factors and autoimmunity; identify and characterize what happens to the immune system when autoimmune disease is present; and, develop animal models for autoimmune diseases. Diagnosis, Treatment and Prevention -- While the 80-plus autoimmune diseases each have different natural histories and a wide range of symptoms, they all share the same underlying cause -- autoimmunity. Therefore, all have the potential to respond to the same or similar treatments. With that in mind, the plan calls for the development of clinical research centers with the capacity to conduct multi-institutional, multi-disciplinary clinical studies; a screening process to identify individuals at risk for autoimmune diseases; public-private partnerships for support of clinical trials for new treatments; and carefully designed clinical trials to test the potential use of existing disease-specific FDA-approved drugs for treating other autoimmune diseases. Training, Education and Information -- The successful translation of research advances into everyday medical applications will rely heavily on the training and education of the medical and scientific community, as well as the awareness level of the general public. According to the research plan, new opportunities must be identified and training and career development must be provided for new and established basic science and clinical investigators in autoimmune disease research. For the medical community, a wide range of education programs and continuing medical education materials about autoimmune diseases must be developed and promoted to health care professionals, updating them on the latest advances. For the general public, the plan calls for better doctor-patient communications, the establishment of a consolidated autoimmunity/autoimmune disease information web site and ongoing public education campaigns. Autoimmune diseases include multiple sclerosis, juvenile diabetes, rheumatoid arthritis, scleroderma, lupus, Sjogren's disease and Graves' disease. Autoimmunity is the underlying cause of these diseases. It is the process whereby the immune system mistakenly recognizes the body's own proteins as foreign invaders and begins producing antibodies that attack healthy cells and tissues, causing a variety of diseases. --- AARDA is the nation's only organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women's health issue, and promoting a collaborative research effort in order to find better treatments and a cure for all autoimmune diseases. For more information, visit AARDA's web site at http://www.aarda.org or call 888-856-9433. |