Federal research plan released

Plan targets Sjögren’s syndrome and other autoimmune diseases

A ground-breaking plan to address the dearth of research into autoimmune diseases has just been released by the U.S. Department of Health and Human Services (HHS). The plan will greatly enhance research efforts for the 4 million Americans who suffer from Sjögren’s syndrome. To ensure attention for research into Sjögren’s, the SSF played a vital role in launching the concept for this plan, and in writing, editing, and reviewing it.

HHS Secretary Tommy Thompson announced the 2003 release of the National Institutes of Health (NIH) Autoimmune Diseases Research Plan saying, “This new research plan will guide our efforts to understand the causes of these diseases and how we can better treat and prevent them to improve people’s lives.”

Specific recommendations on future research directions and demonstrated commitment of the federal government to autoimmune disease research and education of the medical community are highlighted by the plan.

Sjögren’s syndrome is included in the plan right from the top and recognized as an autoimmune disorder which has garnered little attention. Elias Zerhouni, MD, Director of the NIH, begins the report with the statement: “Physicians and scientists have identified more than 80 clinically distinct autoimmune diseases. Several are well known, including rheumatoid arthritis, multiple sclerosis, type 1 diabetes, and systemic lupus erythematosus; others are less familiar, including autoimmune hepatitis, Sjögren’s syndrome, autoimmune ear disease, and pemphigus.”

This comprehensive research plan emphasizes the interrelation and overlap of many autoimmune diseases, of which Sjögren’s syndrome is a prime example. Four personal vignettes illustrating this overlap are included in the research plan, two of those from Sjögren’s syndrome patients. “We had a wonderful response from SSF members who submitted their personal and poignant stories about diagnosis, treatment, and living with Sjögren’s syndrome. The many stories were read by collaborators from federal government health agencies and helped convince them of the seriousness and difficulties faced by Sjögren’s syndrome patients and recognize the specific needs of Sjögren’s patients,” said Elaine Alexander, MD, PhD, Chair of the SSF Government Affairs Committee.

Stories by Kathy Hammitt and SSF’s Kim Vaughn were chosen to be included in the plan. Hammitt says other stories have already been used in written congressional testimony and will continue bringing important human facets to illustrate Sjögren’s syndrome for our lawmakers.

Conservative estimates currently cite autoimmune disease numbers as 5-8% of the American population, or 14-22 million people. The chronic and serious nature of these diseases poses a major burden for many Americans, according to Anthony S. Fauci, MD, Director, National Institute of Allergy and Infectious Diseases (NIAID), NIH. Fauci adds that “The social and financial burdens imposed by these chronic, debilitating diseases include poor quality of life, high health care costs and substantial loss of productivity.”

Leaders from the SSF worked on every aspect of the NIH Autoimmune Diseases Research Plan, which was created at the request of Congress as part of the Children’s Health Act of 2000 and prepared by the NIH Autoimmune Diseases Coordinating Committee. The National Coalition of Autoimmune Patient Groups, in which SSF is active, helped establish both. SSF’s Hammitt, Alexander, and Arthur I. Grayzel, MD, have played active roles on the committee since its inception. In addition to its contribution on working groups and steering committees that composed and edited major sections of the plan, the SSF had five other leaders contributing to the plan: Philip C. Fox, DDS, Frederick B. Vivino, MD, Ann Parke, MD, Stephen J. Walsh, ScD, and Patricia Pletke, MD. Stuart Kassan, MD, Chair of the SSF Medical and Scientific Advisory Board, served on the Expert Panel that reviewed and endorsed the final plan.

Highlights of the plan

• The Burden of Autoimmune Diseases — Studies will more accurately determine the incidence, prevalence and severity of autoimmune diseases in the U.S. as well as the number of deaths that result from these disorders.
• Cause of Autoimmune Diseases — The plan calls for researchers to identify the genetic and environmental factors that lead to autoimmune diseases and to investigate the relationship between them. Other studies will examine more closely what happens to the immune system during autoimmune diseases. To facilitate this research, new animal models of autoimmune disorders will be created.
• Diagnosis, Treatment and Prevention — The plan calls for developing centralized, broad-based clinical research centers with the capacity to test potential new treatments and diagnostics with multi-institutional, multi-disciplinary clinical studies. The plan encourages public-private partnerships in creating new treatments. Scientists are also challenged to improve the screening processes that identify at-risk individuals.
• Training, Education and Information — According to the plan, new training and career opportunities must be available to scientists considering a career in autoimmune disease research. For physicians, continuing medical education materials on autoimmune diseases should be created to update them on the latest research advances. For the general public, autoimmune disease information will be made available via the internet and ongoing public education campaigns.

Autoimmune diseases like Sjögren’s syndrome have long faced many obstacles to development of new treatments and in increasing our understanding about the underlying mechanisms. As Dr. Zerhouni states, “The Research Plan highlights many unprecedented opportunities to increase our understanding of autoimmune diseases ... (and) should ultimately allow the translation of new knowledge into more effective treatments and prevention strategies.”

Print copies of the plan can be ordered by writing to the NIAID Office of Communications and Public Liaison at the following address: 31 Center Drive MSC 2520, Bethesda, Md. 20892-2520. The plan can also be found at Autoimmune Plan

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