When Linda Reinstein and Doug Larkin first started the Asbestos Disease Awareness Organization eleven years ago, they had no idea how much it would grow. In mid-April, the group hosted its 11th annual International Asbestos Awareness Conference, which was attended by over 200 people.
“We had a mission and a vision to end the mesothelioma that was ravaging through our loved ones bodies,” said President Linda Reinstein, while recounting the story of ADAO’s origins.
As she spoke, a picture of the attendees of the organization’s first conference glowed to either side of her on two large projector screens. Billed as a press conference, the first meeting in 2004 was attended by a small group of about 30 people, but lasted nearly three hours.
“We realized that a much bigger conversation was needed,” Reinstein said.
And so the International Asbestos Awareness Conference was born.
On April 18, 2015, people from nine countries gathered for the 11th annual International Asbestos Awareness Conference in Washington, D.C. Among their number were doctors from the UK, Mexico, and the United States, inspectors from Brazil and Pakistan, advocates from Australia, researchers from Germany, Netherlands, Finland, and patients from around the world.
“This is such a diverse group like no other meeting,” said Dr. Arthur Frank in his opening remarks. Dr. Frank is a co-chair of ADAO’s Scientific Advisory Board. “I am honored to be here.”
Simmons Hanly Conroy is proud to be the longest consecutive sponsor of the ADAO conference and a platinum sponsor for the past three years. More than 125 people attended the first session with more watching the livestream.
Every year more than 107,000 people die from asbestos-caused diseases around the world, according to the World Health Organization. In the United States, 10,000 people die from asbestos-related diseases.
“As Dr. Selikoff, said – “Statistics are people with their tears wiped away.” Linda said while introducing the conference’s first speaker, Sandra Neuenschwander, a mother who lost her 29-year-old son Michael to mesothelioma this past year.
Sandra continues his legacy by working to secure an asbestos ban by sharing his story. This past year, she presented Michael’s story during ADAO’s Senate Staff Briefing. See Sandra’s interview with Linda here.
Another personal story presented during the conference was that of Ellen Patton. She is a 14-year mesothelioma survivor. When she was first diagnosed in 2001, her doctor gave her 6-18 months to live. He told her to ‘use her time well.’
ADAO honored Ellen during its awards banquet with the Alan Reinstein award for her advocacy work to ban asbestos. Ellen attending and presented an numerous Congressional meetings and staff briefings on behalf of mesothelioma victims throughout the nation and around the world. Her voice has been strong in opposing the “so-called” Furthering Asbestos Claim Transparency Act.
“The FACT Act would rob my safety,” she told conference attendees. The FACT act would require asbestos bankruptcy trusts to release private information of people who submitted injury claims to the trust.
When Ellen was first diagnosed, a known criminal received her information about her diagnosis and used it to scam other cancer patients on his website that was selling a fake cancer drug, she said. While going through the aggravation of getting her name and photo off the website, she was also threatened and harassed.
“I was terrified,” she said. “This is just one example of how someone can prey on cancer patients when privacy information is publicized – just like me, no one would be safe if the FACT Act was passed.”
The asbestos awareness conferenced lasted for two days and Ellen, Sandra, Linda and Dr. Frank were just a few of the more than 40 speakers from nine countries. Videos of the various sessions and keynote addresses are available on ADAO’s website.
