U.S. Senators, National Autoimmune Organizations Host Briefing on New NIH Autoimmune Disease Research Plan; Marks Major Milestone for Millions of Americans Suffering from Autoimmune Disease

3/14/2003

From: Stephanie Tonnesen of Carway Communications, Inc., 212-378-2020

WASHINGTON, March 14 -- U.S. Senators and the National Coalition of Autoimmune Patient Groups today unveiled a major National Institutes of Health (NIH) medical research plan and called on Congress to provide $450 million dollars annually to fund it.

At a Capitol Hill briefing, Senators Joseph R. Biden, Jr. (D-Del.), Tom Harkin (D-Iowa), Edward M. Kennedy (D-Mass.), Richard Shelby (R-Ala.) and Arlen Specter (R-Pa.) detailed elements of the new NIH Autoimmune Disease Research Plan which utilizes a comprehensive multi-disciplinary, multi-agency approach.

The NIH plan 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. Simply it means that all federal agencies involved in autoimmune research must work together. The purpose of the briefing centered on educating Congress about the plan and the need to appropriate the full $450 million dollar budget requested.

"Autoimmune diseases strike some 50 million Americans, are one of the top ten leading causes of death in children and women age 65 and younger, and represent nearly $100 billion in annual direct health care costs. Their impact is on par with that of cancer and heart disease, and with this plan, that recognition has come," said Virginia Ladd, executive director, American Autoimmune Related Diseases Association (AARDA) who served as moderator for the morning's briefing and on the expert panel that developed and refined the plan. "Now it's time for us as a nation to commit the dollars that will allow for the full implementation of the research plan."

Speaking at the briefing were: -- Kellie Martin, actress and American Autoimmune Related Diseases Association spokesperson -- Dr. Noel R. Rose, Director, Autoimmune Disease Research Center, Johns Hopkins University -- Dr. Daniel Rotrosen, Director, Division of Allergy, Immunology and Transplant, National Institute of Allergy and Infectious Diseases -- Dr. Stanley M. Finger, Chairman, American Autoimmune Related Diseases Association -- Katherine Hammitt, Interim Executive Director, Sjvgren's Syndrome Foundation -- Major Katherine McGraw, U.S. Air Force, Autoimmune Disease Patient -- Dr. Frederick B. Vivino, University of Pennsylvania, Sjvgren's Syndrome Center

Created at the request of Congress as part of 2000's Children's Health Act, the NIH Autoimmune Disease Research 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. Some 75 percent of the estimated 50 million Americans who suffer from these diseases are women.

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, please visit AARDA's Web site at http://www.aarda.org or call 1-888-856-9433.