Testimony as spoken by AARDA President/Executive Director Virginia Ladd at the "Moving into the Future-New Dimensions and Strategies for Women's Health Research for the NIH", hosted by Washington University in St. Louis, MO and the Office of Research on Women's Health/NIH on March 4, 2009.

Office of Research on Women's Health at the National Institutes of Health (NIH) Testimony on Autoimmunity as a Women's Health Issue

Thank you for the opportunity to provide oral testimony today.

The American Autoimmune Related Diseases Association (AARDA) is a national organization dedicated to the eradication of autoimmune diseases.

Autoimmune diseases affect more than 23.5 million Americans, 75 percent of whom are women. Autoimmune diseases are one of the top 10 leading causes of death among U.S. women age 65 or younger. AARDA implores the National Institutes of Health (NIH) and the Office of Research on Women's Health (ORWH) to make autoimmune diseases a key research area. We believe this step is imperative because autoimmune diseases are on the rise around the world.

Studies show that the incidence of multiple sclerosis in Padova, Italy, has risen from less than 100,000 cases in 1979 to over 400,000 in 1999.  In Finland, incidence of type 1 diabetes has more than doubled in children in the past 30 years. Additionally, in the United States, celiac disease is more than four times more common today than it was 50 years ago.

These studies show an alarming trend that we believe is occurring throughout the United States and the world. Researchers think that this increase is due to a combination of genetic predisposition and environmental factors. It is imperative that more research projects are developed to explore what in our environment is causing this increased prevalence. Additionally, there is a need to identify more biomarkers in women to determine predisposition to autoimmune diseases so that prevention might be a possibility.

Autoimmune diseases which primarily affect young women in their childbearing years are affecting not only the health of American women but also their economic sustainability, thus undermining the strength and viability of the American family.

The lack of new researchers going into in the area of autoimmune research is a major concern when compared to those in heart disease and cancer. The disparity is even more troubling when one understands that while autoimmune diseases affect more than 23.5 million Americans, heart disease affects 22 million, and cancer affects 9 million Americans. Autoimmune diseases, though they affect more people (the majority of whom are women) than these other very serious diseases do, receive significantly less research funding and attention. For the majority of autoimmune diseases, the therapy has not changed in over half a century. The areas where AARDA believes the greatest impact can be made in research are the following:

 Sex Bias in Autoimmunity

Although there has been some research into sex bias differences in autoimmune disorders, there is a need for more research. It is commonly thought that hormones may play a role in the disparity of these diseases in women in comparison to men.

For example,

 * The incidence of some autoimmune diseases occur more often in women who have completed menopause. Some autoimmune diseases improve during pregnancy while others worsen with no outward provocation.

* Although these findings point to an obvious link, the role of hormones in autoimmune disorders has not been conclusively proved.

 * Recent findings indicate a need for more research concerning pregnancy influences on the incidence and natural history of autoimmune diseases, including epigenetics and environmental exposures in utero and the impact over the lifetime of the baby.

* Researchers have discovered an intriguing link between the existence of higher levels of non-self fetal cells circulating in the blood of women with autoimmune diseases, decades after pregnancy, in comparison to healthy women who also have given birth.

More research such as this is essential to understanding why the sex bias exists amongst patients with autoimmune diseases.

Other areas in which AARDA believe more research is necessary are the following:

 Autoimmune Disease Biomarkers

There is a need to develop a differential diagnostic technique using groups of biomarkers to determine the presence of specific autoimmune diseases. This item is based on the concept that autoimmune diseases can be determined by looking for groups of biomarkers as though they were chords played on a piano. There is also a need to expand autoimmune disease research to include the relationship between these diseases and other serious health conditions.

Genetic Predisposition and Environmental Triggers

Studies on identical twins show only a 30-50 percent concordance in autoimmune disease expression. Therefore, genetic make-up alone does not determine whether someone will "get" an autoimmune disease. Other risk factors, external to the body, are involved in initiating and exacerbating the disease process. While one-third of the risk of developing an autoimmune disorder lies in one's genetic makeup, the remaining causes are thought to be non-inherited and involve environmental factors. For example, exposure to certain environmental factors such as heavy metals, iodine, phthalates, and organic compounds (including PCBs and estrogenic compounds) are thought to induce lymphocyte proliferation and subsequent autoimmunity. Post traumatic stress is also an interesting suspect.

 In Summary

The alarming incidence of autoimmune diseases, rising healthcare costs, significant prevalence in women, and countless numbers of unknowns that still exist regarding the development of autoimmune diseases all point to the severity of the autoimmune issue and lay the foundation as to why ORWH and NIH should include autoimmune diseases as a key research priority.

Thank you for this opportunity.