Monday, March 28th, 2011.
For more than a hundred years, knowledge of asbestos’ risks has been well documented. However, despite the seemingly widespread understanding that asbestos exposure kills, it was only seven years ago, on April 1, 2005 that the first "National Asbestos Awareness Day" was held.
Perhaps even more amazing is the comparatively short chain of events starting, in June of 2003, that led to asbestos awareness day.
It started with a cough
Linda Reinstein had never heard of the mesothelioma when her husband, Alan, was diagnosed with it on the day after Father’s Day, June 16, 2003.
While on vacation, Alan began suffering from a cough that wouldn’t go away. Upon his return home, a trip to his doctor revealed a pleural effusion. Discovery of the pleural effusion led to a series of tests, misdiagnoses, and finallyafter nine monthssurgery.
The thoracic surgeon who performed the surgery found Linda in the waiting room; "are you alone?" he asked. Her heart sank.
The surgeon informed Linda that Alan had mesothelioma, a deadly cancer caused by asbestos exposure. He asked her if Alan had ever worked with asbestos.
"I had never heard of mesothelioma. I couldn’t pronounce it. And worse yet, I found that there was no cure," Linda recalls.
Recovery turns to activisim
After surviving surgery to remove his left lung, pericardium, and diaphragm, Alan returned home to his wife and young daughter, Emily, to begin his recovery.
One day after coming home from school, the Reinstein’s 11-year-old daughter announced she wanted to go to Washington to "tell Senator Boxer and Senator Feinstein how hard it is for a girl who’s just 11 to watch her dad suffer."
"At that time, looking back," Linda says, "I had no clue how our life would change."
Linda and Emily traveled to Washington, asking for change. They hoped to prevent others from ending up in their position: watching a loved one die from a preventable cancer. They attending meetings with a photo of Emily and Alan dancing, and pointed out the dances and events asbestos exposure would rob from their family.
It was outside of these meetings, however, that Linda began to realize just how serious the problem of asbestos exposure was.
"It didn’t matter if we were standing in line for a Starbucks coffee or waiting for a taxi on our first trip, everywhere I went someone would say ‘are you just here for vacation?’" After explaining Alan’s diagnosis, inevitably the other person would share their own story of family member who had been diagnosed with an asbestos disease.
Linda found that asbestos diseases were not as rare as she had perviously been told, "they are just underreported."
Frustrated by the number of people injured by asbestos, the long history of knowledge about asbestos’ risks, and the lack of a ban on asbestos in products, the Reinstein’s took action. On April 1, 2004, less than a year after Alan’s mesothelioma diagnosis, Linda Reinstein co-founded the Asbestos Disease Awareness Organization (ADAO).
Among the goals of the ADAO was to "educate the medical community and concerned citizens regarding early detection, prevention, treatment and a cure for asbestos related diseases."
One year later, in 2005, the ADAO proposed a resolution designating April 1 as "National Asbestos Awareness Day." Nevada Senator Harry Reid (D-NV) and Tennessee Senator Bill Frist (R-TN) brought the resolution before the Senate Judiciary.
This year, nine Senators were listed as cosponsors and key supporters for the resolution declaring the first week of April as "National Asbestos Awareness Week."
"Reinstein’s don’t give up"
Alan Reinstein lost his battle with mesothelioma in May of 2006. Surviving just shy of three years following his diagnosis was actually remarkable considering the 6-12 months most mesothelioma patients are estimated to have following a diagnosis.
After his death, Linda wondered "what now? Alan’s gone. Do we just give up with asbestos and mesothelioma?" However, remembering the promise Emily and Linda made to Alan to achieve a ban on asbestos, she reflected on what they’d deemed the Reinstein’s family motto: "Reinstein’s don’t give up."
"We persevered. We’ve now become the largest asbestos victims organization in the United States."
The US and Canada remain the only industrialized countries that have not banned asbestos. Despite not yet achieving a US ban on asbestos, the ADAO continues to work with victims, communities, and legislators increasing awareness of asbestos’ dangers, protecting the rights of victims, and working toward an asbestos ban.
This year, the ADAO will host its Seventh Annual International Asbestos Conference on April 1-3, 2011 in Atlanta, GA. Experts, patients, and their families will discuss the public health, environmental, and economic impacts of asbestos.
Thanks to growing interest in Asbestos Awareness Day, what was once a single day, has now grown into a "Global Asbestos Awareness Week." From an ADAO press release: "What started as a day has grown into a full week of international activities incorporating education, advocacy and community driven efforts to fuel a worldwide ban on asbestos and provide resources and hope to asbestos victims and their families."
For Emily and Linda Reinstein, the journey must seem long, lengthened by the pain of loss and the frustratingly slow winds of change. However, for the millions of people injured by asbestos over the last 150 years, the Reinstein have, in just a few short years, brought new levels of awareness, education, and research to legislators and the public, and hope to asbestos victims and their families.
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