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When her husband was diagnosed with mesothelioma in 2003, Linda Reinstein was devastated. She had never heard of the disease, couldn’t pronounce it and soon learned that doctors couldn’t cure it.
Sometimes, she would sit crying on a box in a dark garage in her southern California home, trying, she recalls, “to handle my grief and my bewilderment. I was alone.” Then she would pull herself together and walk back into her house to help take care of her husband Alan and her then 10-year-old daughter Emily.
Alan Reinstein died in 2006 at age 66 after a fierce battle with mesothelioma, but Linda has carried on his fight to this day. As a way of coping with her tragedy and intense grief, she co-founded the Asbestos Disease Awareness Organization (ADAO) in 2004, a nonprofit with a mission to serve as a voice for victims of mesothelioma and other asbestos-related diseases. The organization has played a major role in fighting for victims and helping to shape public policy.
Turning anger into action
“I’ve taken my anger and turned it into action,” Reinstein tells the Mesothelioma Cancer Alliance. She says she is appalled that the United States still imports hundreds of metric tons of chrysotile asbestos every year. “Asbestos remains legal and lethal in the United States and imports continue,” she says. “We need to raise awareness to shape public policy to indeed finally ban asbestos.”
ADAO performs a crucial role by making sure members of Congress, state legislators and their staffs hear from the victims of asbestos before setting policy, says Susan Vento, an anti-asbestos legislation advocate and co-author of a book about mesothelioma for new patients. Her husband, Bruce Vento, died of mesothelioma in 2000 after serving as a Democratic congressman from Minnesota for 24 years.
“They [lawmakers] end up hearing from folks whose lives have truly been impacted by dealing with the disease,” Vento says in an interview. “It helps influence public policy and create awareness.”
ADAO began with modest, grassroots beginnings but has since grown to have a significant impact in the United States and overseas. Reinstein recalls walking the halls of the Hart Senate Office Building and knocking on doors in 2004, trying to get United States Senators and their aides to listen to her story. She and Doug Larkin formally founded ADAO shortly thereafter. Larkin is a former chief executive of Larkin Communications, a strategic communications and public affairs firm based in Washington, D.C. He also had a close relative who died from mesothelioma.
Education, advocacy and community
ADAO is dedicated to three core initiatives: education, advocacy and community. On the education front, ADAO has built an extensive resource library with materials that are widely shared in the U.S. and around the world, and the organization provides speakers at international conferences and events devoted to public health. On the community level, ADAO provides support and resources to asbestos-disease patients and families around the world. Reinstein says she has never forgotten the isolation she felt when her husband was diagnosed with mesothelioma, and she is determined to help others in that situation. ADAO now makes extensive use of social media platforms including Facebook and Twitter to support and unite families and lessen their sense of isolation.
In terms of advocacy, ADAO has a significant and continuing impact. As a leader in awareness, ADAO has helped draft and push the U.S. Senate to pass 11 consecutive National Asbestos Awareness day or week resolutions, including one this year. It has held half a dozen congressional staff briefings on asbestos policy, and Reinstein has testified before Congressional committees and made more than 100 presentations at public health and other conferences around the world. Recently, ADAO has been vigorously fighting to defeat the Furthering Asbestos Claims Transparency (FACT) Act, which would make it significantly more difficult for asbestos victims and their families to file claims, likely delaying their receiving compensation. The bill, which is being pushed by asbestos companies and the U.S. Chamber of Commerce, is currently pending in Congress.
"Where Knowledge and Action Unite"
ADAO has launched several new initiatives this year alone. In February, it announced a new campaign, “Hear Asbestos, Think Prevention,” aimed at preventing asbestos exposure by featuring essential prevention materials explaining how to prevent asbestos exposure at work, in the home or after a disaster, what to do after exposure and how to help educate the public about the harm that asbestos causes.
Later this week, ADAO is hosting its 11th Annual International Asbestos Awareness Conference in Washington. The three-day conference, titled “Where Knowledge and Action Unite,” will bring together asbestos patients, physicians, researchers, educators and public health advocates from around the world. More than 30 experts, researchers and asbestos victims from 10 countries will present the latest advancements in diagnosing and treating asbestos-caused diseases, prevention, and global advocacy.
Vento is one of two keynote speakers at this year’s ADAO conference and plans to speak about the power of asbestos victims’ stories and the importance of telling them to elected officials, their staffs and journalists. The other keynote speaker is Dr. Jorma Rantanen of Finland, a professor at the International Commission on Occupational Health, a leading scientific agency in the area of occupational health. One of the commission’s main priorities is a global ban on asbestos.
This year’s convention also features several other public officials and scientists from around the world. The Brazilian Labour Public Ministry, for example, is slated to receive an award for their steadfast efforts to protect workers’ safety and health and to promote justice for asbestos workers and victims.
The main work at the conference will take place during four workshops. One workshop will discuss progress and challenges from the frontlines, a second will discuss medical advancements in diagnosing and treating asbestos-related diseases, a third will discuss prevention and a fourth will be devoted to strategies for bringing about a global ban on asbestos. Each of the panels include a combination of patients and public health and medical experts.
Standing on the shoulders of giants
Reinstein is quick to point out that the credit for ADAO’s strategy and success has been built on the work performed by numerous scientists, public health advocates and ordinary people who have banded together to fight asbestos. “It’s not my story – it’s not about one woman,” she says. “It’s about the global asbestos strategy and how we can impact change.” She adds, “ADAO has been able to do the work it does because we stand on the shoulders of giants.”
Susan Vento, who first met Reinstein in Washington, D.C. about a decade ago, says that Reinstein’s passion and persistence has been a major force in the battle to raise awareness and shape public policy. “She exemplifies the type of advocate that’s needed – she’s out there telling her story and Alan’s story but she’s also helping provide an opportunity for others to be involved and tell their stories.”
“She’s tireless, articulate and persistent,” says Vento, adding, “She’s like the Energizer Bunny -- her battery never wears down. I think it takes a unique person to keep with it – I am in awe of her ability to stay with the cause.”
At age 59, and nearly a decade after her husband’s death from mesothelioma, Reinstein says she has no intention of easing up.
“I can’t slow down,” she says. “The fire is burning inside me every day.”
Resources for Mesothelioma Patients and their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center