| **INTRODUCTION AND OPENING REMARKS**

**Susan J. Blumenthal, MD, MPADeputy Assistant Secretary for Health (Women’s Health)Assistant Surgeon GeneralU.S. Department of Health and Human Services*Healthy Women 2000* Series Director**

Over the past 6 years, our Nation has witnessed thegreatest focus on women’s health in the history of our country. The year 1990 markedthe beginning of a decade in which scientists, clinicians, and the public became aware ofthe alarming inequities in women’s health including: 1) the failure to include womenin research studies; 2) the inadequate attention to gender differences; 3) the lack offunding for women’s health concerns; 4) the lack of women’s access to healthcare services; 5) the lack of public and health care professional education onwomen’s health issues; and 6) and the dearth of women in leadership positions in thehealth professions and in scientific careers.

My position as the country’s first Deputy AssistantSecretary for Women’s Health in the U.S. Department of Health and Human Services wasestablished by the Clinton Administration to redress long-standing inequities inwomen’s health, a cause that for too long had been neglected in the halls of publicpolicy, in the ivory towers of academia, at the research bench, and at the hospitalbedside.

Today, we are writing a new national prescription toimprove women’s health nationwide. The Office on Women’s Health in theDepartment of Health and Human Services serves as the focal point for Federal efforts toimprove women’s health, overseeing and coordinating women’s health research,health care service delivery, and public and health professional education across theagencies of the U. S. Public Health Service, including the NationalInstitutes of Health (NIH), Centers for Disease Controland Prevention (CDC), Food and Drug Administration (FDA),Health Resources and Services Administration (HRSA), Agency for Healthcare Research andQuality (AHRQ), Substance Abuse and Mental HealthServices Administration (SAMHSA), and the Indian Health Service (IHS). We also work withother agencies of government, including the Department of Defense (DoD), the EnvironmentalProtection Agency (EPA), Department of Veterans Affairs (VA), and the Central IntelligenceAgency (CIA) to improve women’s health care. The Office works with consumer groupsand health care professional organizations to advance the health of American women and todo the catch-up work necessary to improve women’s health in this decade and beyondinto the 21st century.

Women’s health has been made a top national healthpriority, with financial muscle put behind the commitment. In 1996, the Department ofHealth and Human Services is spending over $2 billion for programs directly targeting thehealth of women, an increase of $653 million from just 3 years ago. 

This is the first conference in our 1996 Healthy Women 2000series, an educational initiative that we began last year to focus on critical healthissues affecting women in this century and as we enter the next millennium. Our goal forthis series has been to provide women with the tools and knowledge they need to lead longand healthy lives.

To understand the goals of Healthy Women 2000, women’shealth must be placed in historical perspective. In the year 1900, women died, on average,at age 48 and of acute illnesses like pneumonia and diphtheria and they died ofchildbirth. Since that time, thanks in large part to government-sponsored public healthinterventions like vaccinations and improved sanitation, and to advances from medicalresearch, women’s lifetimes have been extended by 30 years. Today, on average, womendie at age 79. The nature of the diseases that affect us has changed, too. Women nowsuffer from chronic illnesses such as heart disease, cancer, lung disease, stroke, anddebilitating autoimmune diseases.

This conference focuses on autoimmune diseases, anunderstudied, misunderstood, and often misdiagnosed class of illnesses that, takentogether, are the fourth leading cause of disability in women, with a cost to the Nationof an estimated $86 billion a year and with incalculable physical and emotional costs tothe women who suffer from them.

In autoimmune disease—an umbrella term thatencompasses over 80 separate disorders—the immune system becomes the body’s ownworst enemy, functioning in an overactive and confused way. Instead of recognizing andattacking foreign substances in the body, it attacks a person’s own cells and organs.The resulting damage, inflicted over time by the body’s own disease-fighting whitecells, manifests as autoimmune disease.

Depending upon the body system affected, these diseaseshave many different symptoms, treatments, long-term outcomes, and names—names likemultiple sclerosis, lupus, rheumatoid arthritis, scleroderma, type I diabetes, andSjogren’s disease.

Despite their devastating human and economic toll,autoimmune diseases are among the least investigated, most difficult to diagnose, andphysically and emotionally painful of chronic illnesses affecting Americans today. Becausethe initial symptoms of these illnesses may affect many organ systems and present withaches, pains, visual changes, depression, and personality changes, women may bemisdiagnosed as experiencing emotional problems or other illnesses. As a result, diagnosisand appropriate treatment are often delayed. 

Taken together, autoimmune diseases are very much awomen’s health issue. About 75 percent of these illnesses occur in women, mostfrequently in women of childbearing age. Both lupus and Sjogren’s disease, forexample, affect 9 times as many women as men; women with rheumatoid arthritis outnumbermen 4 to 1. For every 1 man affected by scleroderma, there are 3 women with the disease;and twice as many women are affected by multiple sclerosis as are men.

Symptoms of autoimmune diseases can range from mild tosevere; some of these illnesses can be fatal. Further, the clinical course of theseautoimmune illnesses may vary with reproductive events such as pregnancy. For example,some of the autoimmune diseases improve during pregnancy while others exacerbate; some mayget better premenstrually or at menopause, and others may worsen. The precise mechanismsunderlying these differences remain elusive.

The underlying causes of autoimmune disorders are slowlyyielding to scientific inquiry. Some researchers believe autoimmune disease has ahereditary component—but mysteriously, the manifestation may arise as a range ofdifferent diseases within a single family. Thus, a mother may have lupus, a daughterdiabetes, a sister Sjogren’s disease, and a grandmother rheumatoid arthritis. 

A panoply of other questions must be answered. For example,why are women affected more than men and what biological, psychosocial, and environmentalfactors contribute to the sex differences in rates of these illnesses? Why do reproductiveevents such as pregnancy alleviate the symptoms of one autoimmune disease and aggravatethe symptoms of another? And, importantly, what is being done to better understand theseillnesses and to develop new treatments and preventive strategies?

The goal of this conference is to elucidate the answers tothese and other questions and to better educate women, health professionals, andpolicymakers about this understudied and neglected constellation of debilitating diseases.National experts in the field of autoimmune disorders will provide the most currentknowledge about the symptoms, clinical course, and treatment of these illnesses. Leadingscientists will share exciting new research findings that are expanding our understandingof autoimmune disorders, providing hope for a healthier future for American women.

I want to extend my deep appreciation to the NationalMultiple Sclerosis Society and the Consortium of Multiple Sclerosis Centers as well as tothe Congressional Caucus for Women’s Issues, the Lupus Foundation of America, theScleroderma Research Foundation, and the Sjogren’s Syndrome Foundation forcollaborating with the Office on Women’s Health in the Department of Health and HumanServices to bring this conference to fruition.

Special thanks are owed to Janet Waxman and the HealthyWomen 2000 honorary advisory committee co-chaired by Linda Daschle, Jane Gephardt,Katherine Porter, and Catherine Stevens, whose thoughtful and dedicated efforts havecontributed to the success of this conference series.

Appreciation is also due to Teva Marion Partners for their educationalgrant to the National Multiple Sclerosis Society and the Consortium of Multiple SclerosisCenters that has helped make this program possible, and for their commitment to fightingautoimmune disorders.

An old adage reminds us that "it is darkest justbefore the dawn." Without question, there has been considerable darkness surroundingour understanding of autoimmune disorders in the past. We hope this conference and theseproceedings will help light the way to a new dawn of understanding about these illnesses,helping to unlock some of the mysteries that have surrounded them in the past.

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