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EWG Wonder Woman: Linda Reinstein of Asbestos Disease Awareness Organization

Friday, March 14, 2014

First in a time-to-time series of EWG profiles of women leaders who are making a difference in environmental health.

In June of 2003, Linda Reinstein found out that her husband Alan had a type of lung cancer called mesothelioma, caused by breathing asbestos. “I can treat it,” the surgeon told her, “but I can’t cure it.” 

“Meso – what?” Linda said.

Alan Reinstein, a 63-year-old information technology executive, worked in a spotless southern California office and had no idea where he might have encountered the microscopic, odorless, needle-sharp asbestos fibers that set mesothelioma in motion. His baffled doctors had spent nine months testing him for everything from AIDS to tuberculosis, but never asbestos disease. The surgeon who opened his chest solved the mystery, but the prognosis was grim.  

First she wept. Then she dug in, frantically searching the web for medical and scientific information about treatments – and hope. She found little of either.

Then she ignited.  

“I was angry and terrified,” she says.  “I thought, how could this happen to us?” She gazed at their 10-year-old daughter Emily and thought, “There won’t be a father-daughter dance at her wedding.”  

But at her lowest point, she discovered she wasn’t alone.  The catalyst was an EWG report that calculated that a silent asbestos disease epidemic was causing 10,000 fatalities a year in the U.S. “Mesothelioma is NOT a rare disease,” she concluded. “It’s misdiagnosed and under-reported. Well, if it happened to us, it is happening to other people.”    

That insight caused Linda Reinstein to co-found the Asbestos Disease Awareness Organization in her Manhattan Beach, Calif., home, with the help of Alan, a web-savvy neighbor and a Washington public relations man whose father-in-law had mesothelioma.  She realized that thousands of Americans – victims, family members and caregivers – desperately needed a community where they could exchange information and,  sometimes, just find somebody to talk to.  And they needed a movement to mobilize pressure for better prevention and research toward a cure. 

“I realized I could tell the story,” she said. “And the more stories I could share, the louder our voice could be.”

Today, Reinstein’s group boasts an online network of more than 30,000 people, 10 Congressional resolutions proclaiming National Asbestos Disease Awareness (the first sponsored by Senate Majority Leader Harry Reid, D-Nev.,) and two Surgeon General warnings.  Linda has given more than 100 speeches in 15 countries, testified at four Congressional hearings and met with hundreds of members of Congress and their staffs, executive branch officials and medical experts.  Recently she attended an international conference on asbestos disease in Helsinki.  From April 4 to 6, she will preside over the 10th Annual ADAO International Asbestos Conference in Washington. Keynote speakers are Rear Admiral Boris Lushniak, Acting U.S. Surgeon General; Sue Vento, widow of the late Congressman Bruce Vento, and Heather Von St. James, mesothelioma patient.  EWG executive director Heather White will be among the speakers.  

The group’s emergence as major player on environmental health issues is largely due Linda’s indefatigable energy and never-take-no-for-answer attitude.  Her motto is “passion, purpose and persistence.”  Her first career – 23 years traveling the world as an American Airlines flight attendant – had not prepared her for running an advocacy group.  But she often volunteered for their 10-year-old daughter’s school and scout troop and had studied community leadership in a program sponsored by the city of Manhattan Beach. She had faith in the power of women to work wonders.

“We women understand what it takes to tell a story,” she says. “We’re memory makers. We can run businesses, we understand innovation and sustainability, and we help other women. We have a universal understanding and language and we can all connect. Women aren’t afraid to lead or follow.  We don’t have to be in the limelight.”

Six weeks after she set up the organization, she demanded  – and got – a meeting with White House aides.  Her message was simple: “If we could prevent exposure, we could eliminate disease.” Her goals, which EWG shares, are breathtakingly ambitious:  a total Congressional ban on asbestos, reform of the weak federal Toxic Substances Control Act of 1976 and progress toward a cure – tall orders in the age of Congressional gridlock, powerful industrial interests and dwindling funding for medical research.

Linda is not deterred.

“It is morally reprehensible,” she says, “that the asbestos industry has been allowed to knowingly peddle toxic asbestos for over a century. It is responsible for causing one of the largest man-made disasters ever.”   Some industry actions, she says, are “criminal,” on the grounds that “failure to warn is a crime.”  

She cites a 2004 EWG investigation that found that although medical literature had documented asbestos disease among workers as early as 1900, some industrial producers and users of asbestos and their insurers covered up the dangers well into the 1980s. The first federal workplace regulations went into force in 1971, and American industry asbestos consumption peaked at 803,000 metric tons two years later, but U.S. asbestos mining continued until 2002.  American industry still imports about 1,000 tons of mostly Canadian asbestos a year for construction materials, roofing, brake pads and vehicle clutches and a few other uses.

Alan Reinstein had never been warned he was anywhere near asbestos. Thinking back, he remembered that in the 1960s, when he was in his 20s, he spent a brief stint as an engineer at a shipyard where nuclear submarines were being built.  In those days, the insides of ships were sprayed with asbestos coating to retard fires.  Or perhaps he had stirred up some old asbestos insulation while doing a home fix-it job.  He would never know.

In the fall of 2004, the surgeon removed his left lung and a rib and rearranged his diaphragm.  Chemotherapy followed.  He wanted to die.  At 63, he had been an avid marathon runner, hiker and expert skier.  After surgery, he was confined to a room, a chair and a bed.

“I loved him way too much to let him give up,” Linda said. She nagged him into going to a support group.

He died on May 22, 2006. He was buried in a plot near a tree and a waterfall.  Linda wept again and went back to work.  “It won’t help me,” Alan had told her, “but it will help others.”

She still runs the organization out of her home office, with the help of a handful of volunteers.

“We don’t have the maze of bureaucratic control” of a larger non-profit, she says.  “I can turn like a jet ski instead of the Titanic.”  She works the phone, calling or visiting anyone she thinks might help move the government toward a ban. “I’ll play the widow card,” she smiles slyly.  “It’s really hard to tell a widow to go home.”

Every week she loses friends, some of them shockingly young. Last June, she sat by the bedside of Janelle Bedel of Rushville, Ind., who died of mesothelioma at the age of 37, leaving a husband and 11-year-old son.  

For the last few months, she has kept a vigil with the family with Michael Bradley of Tunnel Hill, Ga., gravely ill with peritoneal mesothelioma.   On Feb. 2, she presented him the 2014 Special Recognition of Valor Award.

“I have watched him fight for each day of life and never complain,” she says. 

Michael Bradley is 29.

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