Fourth Annual Public Interest Organization Meeting

Case Study on Collaborative Advocacy
February 5, 2003 - Bethesda, Maryland

Ms. Virginia Ladd, President and Executive Director, American Autoimmune Related Diseases Association (AARDA), East Detroit, Michigan, reviewed the mission of the AARDA and the importance of advocacy. She focused on the empowerment that collaborative advocacy offers PIOs.

The AARDA is dedicated to increasing national awareness of autoimmunity as a disease category and as a major issue in women's health and promoting collaborative research to improve treatment and find cures for autoimmune diseases. Autoimmune diseases are expressed in many different ways (e.g., lupus, hemolytic anemia, rheumatoid arthritis, Hashimoto's disease, idiopathic thrombocytopenia, celiac disease), but each manifestation involves a patient's own immune system attacking his or her cells. According to Ms. Ladd, increased coordination and collaboration are essential for making progress against these diseases. Researchers continue to focus on specific autoimmune diseases, cross-talk among medical disciplines in this area is poor, and public awareness of autoimmunity as the underlying cause of these diseases is lacking.

Why Advocacy?

Ms. Ladd encouraged all PIOs to make advocacy a priority. Advocacy empowers patients, and all PIOs, regardless of their size, have an important role to play in local, national, and international advocacy and collaboration. Four principal targets for PIO advocacy efforts are:

  • Individual patients (i.e., "case" advocacy)
  • Health care payers
  • Health care providers
  • Government

The goal is to empower all patients to be their own best advocates — for improved insurance coverage, resolution of medical controversies, choice of health care options, accurate medical information — and to give them a voice in the national research agenda.

Advantages of Collaborative Advocacy

Many PIOs mention advocacy prominently in their Web sites. Ms. Ladd emphasized that organizations can increase their effectiveness by working together in coalitions.

Collaboration is a resource for PIOs, similar to fundraising, and yields multiple returns. AARDA initiatives include establishment of an AARDA committee to identify collaborative opportunities that fit into the overall AARDA strategic plan, cofunding an autoimmune research center at Johns Hopkins University, participation in NIH meetings, and collaboration with many other organizations, including larger ones, to support scientific meetings, sponsor an "autoimmune day," develop media stories, organize public forums, and promote research funding.

Ms. Ladd emphasized that the first step in the association's successful advocacy efforts has been to build trust with and among collaborative advocacy groups — for example, by referring inquirers to other appropriate groups, listing other groups in articles written for the media, and referring potential donors to related groups. These actions set the stage for creation of the National Coalition of Autoimmune Patient Groups (NCAPG). The coalition, in turn, has increased public awareness of autoimmune disease, stimulated formation of an NIH Autoimmune Diseases Coordinating Committee, captured sympathetic interest in Congress, successfully advocated for a national research plan for autoimmune diseases, and developed a 5-year advocacy plan that includes congressional briefings and press conferences.

Collaboration for In-kind Services

Ms. Ladd commented that PIOs also can increase their effectiveness by collaborating with private-sector organizations that offer pro bono, in-kind services. Such services are often "renewable" and may be arranged with public relations, law, and accounting firms, Web-site management services, and office management groups. In-kind services can reduce an organization's management expenses significantly.

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  Last modified: 3/31/03

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