[Congressional Record Volume 144, Number 151 (Wednesday, October 21, 1998)]
[Extensions of Remarks]
[Page E2288]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


[[Page E2288]]


             NIH OFFICE OF AUTOIMMUNE DISEASES ACT OF 1998

                                 ______
                                 

                          HON. HENRY A. WAXMAN

                             of california

                    in the house of representatives

                       Tuesday, October 20, 1998

  Mr. WAXMAN. Mr. Speaker, I am pleased to introduce the NIH Office of 
Autoimmune Diseases Act of 1998. This bill is intended to promote 
discussion of how we can enhance the Federal government's response to 
the severe impact of autoimmune diseases and disorders on our country. 
Most importantly, it is intended to highlight the urgency of treating 
autoimmune diseases as a priority women's health issue.
  Today, there are at least eighty recognized autoimmune diseases, 
ranging from multiple sclerosis, rheumatoid arthritis and lupus to 
juvenile-onset diabetes, scleroderma, Graves's disease and thyroiditis. 
All of these diseases and disorders are characterized by autoimmunity, 
the terrible case of the body's immune system rebelling against itself. 
Frequently inherited, these diseases and disorders lead to death or 
severe disability, cause a painful loss in patients' quality of life, 
and inflict a tremendous toll on their families and communities. 
Collectively, autoimmune diseases cause untold mortality and morbidity 
in this country, as well as billions in health care expenditures and 
lost productivity every year.
  Yet last December, Acting Deputy Assistant Secretary for Women's 
Health Susan Wood observed that, ``Despite their devastating human and 
economic toll, autoimmune diseases are among the least investigated, 
most difficult to diagnose, and physically and emotionally painful 
diseases that face Americans today.''
  This is a terrible and unnecessary situation. Even worse is that the 
disproportionate impact of these diseases on women is even less well 
recognized. Few people in our country know that seventy-five percent of 
those afflicted with an autoimmune disease are women. I doubt many of 
my colleagues are aware that multiple sclerosis is twice as common in 
women compared to men.
  These statistics do not adequately reflect how important autoimmune 
diseases are to women. The best available research suggests that 
autoimmunity may be the cause of 50 to 60 percent of unexplained cases 
of infertility and is also a major cause of miscarriages. But these 
numbers only hint at the pain and doubt experienced by women and their 
families as a result of autoimmune diseases.
  The suffering of patients from the clinical manifestations of these 
diseases and disorders can be exacerbated by a lack of information and 
understanding. A recent study by the American Autoimmune Related 
Diseases Association found that two-thirds of all women suffering from 
autoimmune diseases has been labeled ``chronic complainers'' before 
being correctly diagnosed. No woman should have to experience such 
insensitivity and lack of awareness when seeking care for serious 
diseases.
  The Federal government is pursuing an agenda of research and 
education on autoimmune diseases. For several years, the National 
Institutes of Health (NIH) has supported a multi-institute research 
program on the mechanisms of immunotherapy for autoimmune disease. 
There is an NIH research program for autoimmunity centers of 
excellence. And last September, several NIH institutes and the Office 
of Women's Health Research initiated a research program focusing on 
genetic susceptibility to autoimmune diseases.
  But it is clear that more can be done. The NIH recently established 
an autoimmune diseases coordinating committee, to help facilitate the 
innovative research being conducted on autoimmune diseases. My 
colleague, Congresswoman Morella, has played a leadership role in this 
regard. The Congress has also dramatically increased NIH funding over 
the past few years, with the expectation that autoimmune disease 
research would benefit from this trend.
  This bill would take these promising developments a step farther. 
Progress on finding cures and treatments for autoimmune diseases would 
surely be expedited by a permanent office at the NIH dedicated to 
developing a consensus research agenda, as well as promoting 
cooperation and coordination of ongoing research. Such an office could 
serve as an advisor to the Director of NIH and the Secretary of Health 
and Human Services, and act as a high-level liaison to the many 
important autoimmune disease patient groups, such as the National 
Multiple Sclerosis Society, American Autoimmune Related Diseases 
Association, the Arthritis Foundation, Juvenile Diabetes Foundation and 
the National Organizations for Rare Disorders.
  I am introducing this legislation with the intention of fostering 
discussion. I look forward to working with the NIH, the Administration 
and patient groups on it. Upon its introduction in the next Congress, I 
urge my colleagues to support it as a step forward in the search for 
cures for autoimmune diseases.

                          ____________________