Autoimmunity: A Major Women's Health Issue
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Autoimmunity: A Major Women's Health Issue

AARDA is the nation’s only non-profit organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women’s health issue, and promoting a collaborative research effort in order to find better treatments and a cur

Paul Holmes

 

It strikes some 50 million Americans, 75 percent of whom are women in their childbearing years.  It is one of the 10 leading causes of death among women ages 65 and under.  It is the fourth leading cause of disability among women behind cancer, heart disease and mental illness.  Despite these statistics, autoimmunity and autoimmune diseases (ADs), such as type 1 diabetes, multiple sclerosis, lupus, Graves’ disease, rheumatoid arthritis and autoimmune hepatitis, among others, remain among the most poorly understood and researched of any category of illness.  As a result of this lack of recognition, as well as the fact that ADs strike mostly young women in their childbearing years, a time when they are traditionally most healthy, getting a diagnosis can prove extremely difficult.  Symptoms vary widely, notably from one illness to another, but even within the same disease.  And, because these diseases affect multiple body systems, their symptoms are often misleading, which hinders accurate diagnosis.  However, one thing is known.  In all of these diseases, the underlying problem is similar – the body’s immune system becomes misdirected, attacking the very organs and systems it was designed to protect.  To help women live longer and healthier lives, a better understanding of these diseases is needed, more research dollars committed and more effective methods of diagnosis and treatment developed.  This is precisely why the American Autoimmune Related Diseases Association (AARDA) was established in 1991.  AARDA is the nation’s only non-profit organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women’s health issue, and promoting a collaborative research effort in order to find better treatments and a cure for all ADs.  

OBJECTIVES:

Position AARDA as the nation’s only organization dedicated to raising awareness and winning the fight against autoimmunity and ADs

Raise awareness of autoimmunity and ADs as a singular disease category (like cancer) and a major women’s health issue

Educate the medical community, legislators and the general public about autoimmunity and ADs as a major women’s health issue

STRATEGIES:

Create a public awareness campaign that highlights AARDA and educates key audiences about the issues

Bolster credibility and drive awareness-raising activities by forging partnerships with like-minded organizations and government agencies

Enlist a national spokesperson who fits the demographic – young women – and personally illustrates the widespread impact of these diseases and the devastation they level among those they touch

Audiences:  U.S. lawmakers, the medical community, national health and general consumer media, and the public at large

TACTICS:

Autoimmunity:  A Major Women’s Health Issue:  An ongoing public awareness campaign aimed at educating Americans at large, the medical community and the nation’s legislators about autoimmunity and ADs, and the devestating effect they level on millions of American women and their families.

Celebrity Spokesperson:  Accomplished actress and former “ER” star, Kellie Martin, who lost her 19-year-old sister in 1998 to a misdiagnosed case of lupus, signed on as AARDA’s official spokesperson and champion of the cause.

Medical Spokesperson:  An autoimmunity  pioneer, Dr. Noel Rose, Chair of AARDA’s Scientific Advisory Committee and Professor of Pathology, Molecular Microbiology and Immunology, The Johns Hopkins University, serves as AARDA’s official medical expert.

Organization Spokesperson:  Virginia Ladd, executive director and founder of AARDA, acts as the “public face” for the organization, speaking on advocacy and other autoimmunity issues.

Partnerships:  Over the past year, AARDA has forged partnerships with several like-minded national and international health organizations, universities and government agencies, including the World Health Organization, the Global Alliance for Women’s Health, the Society for Women’s Health Research, The Johns Hopkins University, New York University Medical Center, North Shore University Medical Center and the National Institutes of Health’s Office of Research on Women’s Health, among others.

Press Briefings:  AARDA, with various partners, hosted three press briefings in New York City to focus attention on the issues and announce latest news in the areas of research and development, and advocacy.

Public Forums: Free public forums were held by AARDA in conjunction with medical conferences at universities and medical centers, giving patients an opportunity to interact with leading medical experts and patient advocates, and providing them with the latest treatment information and coping techniques.

Scientific/Medical Symposia: Hosted by AARDA, both nationally and internationally, these events bring together experts to discuss new breakthroughs in the cause(s), diagnosis and treatment of autoimmunity and ADs.

Government Relations:  AARDA spokespeople participated in an ongoing series of meetings with Washington lawmakers to  push for the creation of legislation that would focus attention and research dollars on autoimmunity at the National Institutes of Health (NIH).

Autoimmunity:  A Major Women’s Health Issue Press Kit:  Targeted to a lay audience, the kit features easy-to-understand information on autoimmunity and ADs.  

AARDA Web Site:  Designed for both a medical and lay audience, the site (www.aarda.org) features general information on the organization and autoimmunity, specific information on each of the 80 known ADs, research updates on new diagnostic approaches and treatments, as well as legislative updates, meeting news and relevant press releases.

Ongoing Media Relations:  In addition to media coverage generated by the press events, ongoing activities continue to call attention to the issues, including pro-active media relations outreach and news releases addressing new research developments and/or other advances.

MEDIA RESULTS…

 Autoimmunity:  A Major Women’s Health Issue public awareness campaign kicked-off at a NYC press conference in October 1999 where AARDA made two major announcements.  It introduced “ER” actress Kellie Martin as its national spokesperson.  Second, the NIH Office of Research on Women’s Health unveiled its “Agenda for Research on Women’s Health for the 21st Century,” making ADs a top priority.

Joining Ms. Martin at the press conference were Dr. Vivian Pinn, Director of the NIH Office of Research on Women’s Health (ORWH) who spoke to the new women’s research agenda; Dr. Michael Lockshin, Director of the Barbara Volcker Center for Women and Rheumatic Diseases at the Hospital for Special Surgery, who presented case studies from his recent book, “Guarded Prognosis” and called for reforms to a health care system whose providers often deny therapies to autoimmune patients;  AARDA Scientific Advisory Chair     Dr. Noel Rose who provided the broad overview of autoimmmunity and ADs; and, AARDA executive director Virginia Ladd who acted as moderator.

Nearly 80 people attended the media conference, including editors from Ladies Home Journal, Self, Glamour, Latina Magazine, Woman’s Day, Bridal Guide Magazine, Women’s Health Advisor, New Woman Magazine, WebMD and CBS Radio Network, as well as representatives from various international, national and local medical and health, and women’s organizations, including the Global Alliance for Women’s Health, the World Health Organization, New York University Medical Center, Juvenile Diabetes Foundation, and the Society for Women’s Health Research, among others.

As a result of the media conference, AARDA formed a new partnership with the Global Alliance for Women’s Health (GAWH), a U.N.-based organization committed to advancing women's health in all stages of life and at all policy levels through health promotion, education, advocacy and program implementation.

On March 2, 2000, AARDA and GAWH organized and sponsored a panel presentation, "Women and Autoimmune Diseases: Gender and Biological Perspectives," at the United Nations Commission on the Status of Women, 44th Session.

At the U.N. meeting, Ms. Martin was joined by Dr. Nassiah Mboi who heads the World Health Organization’s Department of Women’s

Health, Drs. Pinn and Rose, Ms. Ladd and GAWH founder Dr. Elaine Wolfson.

Some 75 people, representing numerous nations from around the world attended the meeting, as did reps from key national media outlets, including NBC’s “Today Show” and the Associated Press.

On March 15, 2000, Ms. Martin spoke on behalf of AARDA at the Society for Women’s Health Research media luncheon in New York City, encouraging women to take charge of their health and participate in clinical research trials.

On June 7, 2000, AARDA organized and sponsored a second U.N. panel presentation, "Women and Autoimmune Diseases: Gender and Biological Perspectives," during the “Focus on Women's Health Around the World in Support of the Beijing Platform for Action,” part of the U.N.’s Beijing+5 meeting.  This meeting was a follow-up to the Fourth World Conference on Women held in Beijing in 1995 where First Lady Hillary Rodham Clinton spoke out strongly on the rights and needs of women globally.

To date, AARDA, its messages and spokespeople have reached a total audience of more than 135.1 million worldwide through some 16 newswire, newspaper and magazine stories and 17 electronic media broadcasts (television, radio and Internet).  Major media outlets include Associated Press, Gannett News Service, The New York Times, The New York Daily News, Harper’s Bazaar, InStyle Magazine, Glamour Magazine, Latina Magazine, ABC’s “Good Morning America” and “The View,” NBC’s “Today Show,” Fox News Channel, Oxygen Television’s “Pure Oxygen,” WebMD.com and CNN.com, among others.

Reader’s Digest just named Ms. Martin as one of its “Health Heroes 2001” for her work with AARDA.

MEDICAL COMMUNITY/PATIENT EDUCATION RESULTS…

Since January 2000, more than 550,000 people have visited AARDA’s web site.  Also, there are more than 5,900 web sites that provide a direct link to one or more of AARDA’s web site pages.  

Two free public forums on ADs as a women’s health issue were held in 2000.  The one held on March 2 in NYC  in conjunction with New York University Medical Center was standing room only with more than 450 attendees.  The one held on February 6 in Seattle, Washington in conjunction with the University of Washington Medical Center was attended by more than 150 local residents.  

  Two scientific/medical symposia were held in 2000 by AARDA.  The first was the Second International Congress of  Autoimmunity, held

in Israel, which dealt with the basic, as well as the clinical aspects, of autoimmunity.  The second was the Consensus Conference on Antiphospholipid Antibodies following the International Conference on Antiphospholipid Syndrome in Tours, France.   

  AARDA sponsored an Autoimmune Day at The Johns Hopkins University Medical Center for the purpose of initiating interest in the establishment of an Autoimmune Research Center and Multi Discipline Autoimmune Diagnostic Triage Clinic.

  AARDA received funds to provide initial support for the newly-established Johns Hopkins Autoimmune Research Center, as well as a postgraduate autoimmune liver disease fellowship and two research grants.

AARDA developed a concept paper for a Multi Discipline Autoimmune Diagnostic Triage Clinic and is in the planning stages with Johns Hopkins University for the establishment of such a clinic.

   AARDA partnered with North Shore University to assist with the establishment of a blood registry of families having two or more members with an autoimmune disease (Multiple Autoimmune Diseases Genetics Consortium).

GOVERNMENT RELATIONS RESULTS…

  AARDA was instrumental in the recent passage of the Children’s Health Act.  Ms. Martin and Ms. Ladd made numerous trips to Washington, D.C., meeting with some 20 U.S. Senators and more than 40 members of the House of Representatives to lobby for the inclusion of the autoimmune language in the Children’s Health Act.  Passed by the Senate and the House and signed into law by President Clinton on October 17, 2000, the act requires the Office of the Director of NIH to develop a National Autoimmune Research Strategic Plan with input from outside scientific and patient groups representing autoimmune diseases, and coordinate research efforts among all NIH institutes, as well as other federal health agencies, including the Food and Drug Administration and the Centers for Disease Control.

FUNDRAISING RESULTS…

As a direct result of media coverage, AARDA was contacted by a group of New York City women who have formed a fundraising committee.  Their inaugural activity, the “First Annual New York City AARDA Benefit,” was held on September 24, 2000 and featured an evening of cabaret with Emmy Award-winning actress Susan Lucci, as well as other leading Broadway and soap opera stars.  The second activity is a Yahoo! Internet Auction that featured several “ER” items, such as a script and scrubs signed by actor George Clooney and other cast members.
In November, the Connecticut-based Samara Jan Terkel Foundation helped raise funds for the establishment of a Autoimmune Diagnostic Triage Clinic.  Later this winter, a Colorado-based foundation will host an art auction in Aspen with all proceeds benefiting AARDA.  

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