Testimony by Natasha Leskovsek, Esq.-AARDA Advocacy Volunteer

    The American Autoimmune Related Diseases Association (AARDA) is the only national voluntary health agency advocating for the over 100 autoimmune diseases as a genetically and clinically interrelated family, like cancer. AARDA’s aim is to initiate, foster and facilitate collaboration in autoimmune awareness, education, advocacy and research. AARDA initiated, supports and facilitates the National Coalition of Autoimmune Patient Groups (NCAPG), a coalition of 25 voluntary health agencies focusing on individual autoimmune diseases.

    The family of autoimmune diseases is under-recognized and as a result poses a major healthcare problem in the United States. These diseases afflict over 22 million Americans, more than twice as many as cancer. According to the National Institutes of Health (NIH), this figure is generally accepted as an underestimate due to a lack of epidemiological studies and problems with diagnosis. Treatment costs exceed $120 billion per year and are rising rapidly, putting autoimmune disease’s financial burden on the same level as heart and stroke disease and cancer. In addition, it is important to note that 75 percent of those afflicted are women. Autoimmune diseases are one of the top ten leading causes of death in females under the age of 65.

     Autoimmune diseases are a major cause of chronic disability, further increasing their financial burden on society. These diseases most often affect children and young adults, leading to a lifetime of disability. Well-known autoimmune diseases include lupus, rheumatoid arthritis, multiple sclerosis, and juvenile (Type 1) diabetes. Lesser-known are scleroderma, Crohn’s disease, myasthenia gravis, polymyositis, autoimmune liver diseases, Sjögren’s syndrome and autoimmune blood disorders.

     There is a huge disparity in autoimmune disease research funding compared to other major disease groups, such as cancer and heart disease. And some autoimmune diseases get a disproportionate amount of research funding compared to the others. Autoimmune research receives approximately 2% of the entire NIH budget.

     Congress addressed these issues in the Children’s Health Act of 2000, which mandated the National Institutes’ of Health (NIH) Autoimmune Disease Coordinating Committee to develop an integrated Autoimmune Diseases Research Plan to address the entire family of autoimmune diseases and their common underlying cause – the immune system mistakenly attacking healthy body tissue and organs. All NIH institutes, the CDCP, VA, FDA and many patients’ organizations provided input to develop and review the Research Plan. It is an excellent plan recommending an integrated cost-effective approach to autoimmune disease research and information dissemination.

     Some of the Autoimmune Diseases Research Plan’s recommendations have been implemented, but most have not. Much remains to be done, especially in the new and promising research areas identified in the Plan. AARDA strongly supports additional funding for the NIH Autoimmune Disease Coordinating Committee to further expand implementation of the Autoimmune Diseases Research Plan. This additional funding will allow the Coordinating Committee to pursue promising research in the areas of environmental triggers, biomarkers and underlying disease mechanisms to help identify individuals at risk of developing an autoimmune disease and develop techniques to prevent the disease or minimize its impact. These three priority research areas hold the broadest potential to benefit the most patients and to reduce healthcare costs, by targeting earlier diagnosis and mitigation of factors that exacerbate autoimmune disease and lead to more serious morbidity and disability.

     AARDA respectfully requests Congress to appropriate $40 million for the NIH Autoimmune Disease Coordinating Committee to expand implementation of the Autoimmune Diseases Research Plan to study environmental triggers of autoimmune disease. This research will pay for itself many times over by helping to reduce the major financial burden the family of autoimmune diseases places on our country.

     On behalf of the many millions afflicted with an autoimmune disease and their families, thank you for the opportunity to address this important issue as Congress develops the Labor, HHS FY 2006 budget.

Testimony by Cecilia Ristau: