Commentary: The Asbestos Disease Awareness Organization 

by Laurie Kazan-Allen



I am just back from Detroit where I had the privilege of attending the 4th annual conference of the Asbestos Disease Awareness Organization (ADAO). In just a few short years, the ADAO has grown into a national organization which represents U.S. asbestos victims at home and abroad; Mrs. Linda Reinstein, the ADAO Executive Director and Co-founder, has spoken at landmark asbestos conferences in Tokyo and Bangkok and, in May 2007, addressed Members of Parliament at the House of Commons. While other groups in the U.S. make grandiose claims and issue fulsome press releases, the ADAO simply gets on with the job in hand. Whether it is providing moral support for families under pressure or practical help for ailing victims, ADAO representatives and volunteers work as a family. The ADAO has been pivotal in many campaigns: helping beleaguered tunnel workers to expose the injustice meted out to them by their employers – the U.S. Government; undertaking asbestos testing of common consumer products; lobbying the government for a bill to ban the use of all asbestos; securing senate resolutions setting aside the first week of April as National Asbestos Awareness Week. With representatives in many U.S. States and in the UK, India, Greece, Canada, Australia, the ADAO has grown into a formidable and positive force which now ranks amongst the top five asbestos advocacy groups in the world.

The program in Detroit included an evening reception on Friday, March 28, a conference on March 29 and a brunch followed by a remembrance service on March 30. Due to the intense interest in these events, the conference was, for the first time, sold out. Participants in Detroit came from seven countries in North America, Europe and Asia. From the very beginning the ADAO's modus operandi has been guided by the principle of inclusivity. Detroit was no exception. On the conference program were asbestos victims, care givers, victim support workers, scientists, civil servants, medical professionals, campaigners, environmental experts and trade unionists. A report on the conference is being compiled and will be available on the ADAO website1 in due course; footage of the conference will also be accessible on ADAO TV.2

The highlights of this year's events for me were presentations by:

  • Terry Lynch from the International Association of Heat and Frost Insulators and Asbestos Workers – this organization cooperated with Dr. Irving Selikoff in the groundbreaking research conducted among asbestos insulators in the U.S. more than 40 years ago;
  • the ADAO's Linda Reinstein who, drawing on her family's own struggle with mesothelioma, outlined a Matrix of Care for Patients and their Families – deal with today but plan for tomorrow was her message;
  • Paul Zygielbaum, ADAO Project Manager of Asbestos Testing, who described the protocol developed and the results obtained by this timely and innovative project;
  • Dr. Aubrey Miller, from the U.S. Public Health Service, who detailed the methods used to assess environmental asbestos contamination in Libby Montana and other asbestos-contaminated communities in the U.S.

The music of Jordan Zevon, the ADAO's National Spokesperson, began and ended the events in Detroit. Jordan's dad Warren, an American rock singer-songwriter and Grammy winner, died from mesothelioma in 2003 and there is no doubt that Jordan's involvement in the ADAO's campaign is personally-motivated. Jordan's music and the fellowship of the ADAO community enabled participants in Detroit to engage with the deadly serious subject of asbestos within a positive framework. It seems bizarre to say you enjoyed a meeting which focused on fatal diseases and frightening medical interventions and yet delegates came away from Detroit in an upbeat frame of mind. That this was the case reveals the attention to detail and the humane spirit which pervades this organization.

ADAO Co-founders Doug Larkin and Linda Reinstein with ADAO Spokesperson Jordan Zevon holding up a Detroit newspaper carrying a front-page article on the ADAO conference.

It is time for the ADAO to receive the recognition it richly deserves. I believe that, if any organization should be administering the funds being promised for medical research into asbestos-related diseases in the United States, it should be the ADAO. The research should be victim-led; the ADAO has both the professionalism and knowledge needed to make sure that the funds will be well-spent. Mahatma Gandhi said there are two types of people: those who do the work and those who take credit for it. I am in no doubt in which group the ADAO belongs.

April 2, 2008


1 or

2 Excerpts from the 2007 ADAO Annual Conference can now be viewed online:



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