By Chairman of the Board Dr. Stanley M. Finger for AARDA 2002 Annual Report InFocus, Vol. 11 No. 2, June 2003
AARDA made great progress in 2002 in advocacy, research, patient support, and physician and general public education. Im confident youll be proud of your organization accomplishments.
Our earlier advocacy efforts led to Congress requiring (in the Children Health Act of 2000) that the National Institutes of Health (NIH) prepare an integrated Autoimmune Diseases Research Plan benefiting the entire family of autoimmune diseases. AARDA Executive Director Virginia Ladd and I, with guidance from Dr. Noel Rose (Chair of AARDA Scientific Advisory Board) contributed extensively to the Research Plan. I chaired the Working Group that prepared the Training, Education, and Information Dissemination Chapter, and Virginia was on the Panel of Expert Reviewers. The Research Plan was reviewed and approved by every NIH Institute, NIH Autoimmune Disease Coordinating Committee (AARDA is a member), the Centers for Disease Control (CDC), the Food and Drug Administration (FDA), the Veterans Administration (VA), and signed off by Health and Human Services (HHS) Secretary Thompson.
The NIH Autoimmune Diseases Research Plan was published on January 10, 2003. I recommend you check out the Research Plan (there a link on AARDA Web site). In the Plan, the NIH increased its estimate of autoimmune disease patients in the U.S. to 14-22 million (a conservative estimate since there are no data for many autoimmune diseases). This puts autoimmune disease prevalence in the same range as cancer (9 million) and heart disease (22 million)! Yet, NIH research on autoimmune disease is a small fraction of what cancer and heart disease receives. The Research Plan lays out an ambitious and achievable integrated research program covering epidemiology, underlying mechanisms, diagnosis, treatment, and physician and public education benefiting the entire family of autoimmune diseases.
AARDA, in collaboration with the National Coalition of Autoimmune Patient Groups (AARDA is a founding member), is working very hard to get Congress to fund implementation of the Autoimmune Diseases Research Plan - were asking for $450 million in Fiscal Year 2004 (FY 04). Please support this critical goal by contacting your Congressmen and specifically requesting this funding. One of the best (and easiest) ways to do this is to send an e-mail from AARDA Web site. Please remember to include a strong request for $450 million in FY 04 for the Autoimmune Diseases Research Plan.
AARDA continues to aggressively support research. In 2002, we provided $125,000 in funding for 15 research programs including exciting cutting-edge research that can lead to major advances in diagnosis and treatment of autoimmune diseases. We cosponsored the Fourth Annual Symposium on Hemostatis and Thrombosis, the New York Academy of Science conference on Immune Mechanisms and Disease, the ITP Conference 2002, the 10th International Congress on Antiphospholipid Antibodies, the 5th International Conference on Neuro Immuno Modulation, and the Fourth Annual Autoimmunity Day at Johns Hopkins University.
Our Web site continues to grow as we add informative articles on autoimmunity, autoimmune diseases, and advances toward better diagnosis and treatment of these diseases. Our quarterly newsletter has also grown, with more articles on the autoimmune diseases and different ways of dealing with them.
As a result of AARDA hard work, the media has taken greater note of the family of autoimmune diseases, citing AARDA as a source of reliable information. Virginia Ladd, our celebrity spokesperson Kellie Martin, Dr. Rose, and Advocacy Committee member Maj. Kate McGraw have been interviewed repeatedly for these articles and TV shows. We provided information for and were cited in Lifetime TV Biography of Kellie Martin, Seventeen magazine, Chicago Tribune, Ladies Home Journal, Essence magazine, Washington FAX, and U.S. Air Force newspapers.
We continue our representation on the Board of the International Alliance of Patients Organizations (IAPO), the National Health Council, the NIH Autoimmune Diseases Coordinating Committee (ADCC), and the National Coalition of Autoimmune Patient Groups. Virginia was asked to testify before the Institute of Medicine on NIH organizational structure. Her description of how the ADCC has helped coordinate autoimmune disease research across the entire NIH campus was well received and may lead to similar Amatrix management@ approaches for other issues involving multiple Institutes.
As you can see, it been a very busy and exciting year! We are definitely making progress toward improved diagnoses, treatments and, eventually, cures for the entire family of autoimmune diseases. With your support, we can do even more in 2003!
