Fueled by loss, Linda Reinstein wages war on asbestos

February 16 • 2024

Linda Reinstein remembers the day she learned her husband had Mesothelioma, a rare and deadly cancer caused by asbestos exposure. It was 2003, and Alan had been sick for months. A series of tests and visits to doctors would finally reveal the devastating diagnosis. 

Alan died in 2006, leaving behind his wife and daughter. The final year of his life was especially devastating, Linda said.  He was, she said, “tethered to supplemental oxygen, like a dog on a leash.” 

Linda was outraged that her husband, who had worked as a metallurgical engineer and done some home repairs as a hobby, had been unknowingly exposed to a deadly carcinogen. She also struggled to understand why people were still being exposed to asbestos.  

“I was grief-stricken,” Reinstein said. “I was also furious that all of us are still at risk for asbestos exposure. This cancer is 100 percent preventable by eliminating exposures. So, I decided to put my anger to good use. I would tell our story until Congress passed a complete ban.”  

Linda, with Alan’s support, co-founded the Asbestos Disease Awareness Organization (ADAO) with Doug Larkin, who also had a loved one diagnosed with Mesothelioma, in 2004. The organization’s mission is to create awareness, advocate for stricter laws and regulations, and provide community support. 

Fast forward 20 years, and Linda, as president of the ADAO, is still waging the battle. Today, she is working with the IAFF, a longtime advocacy partner, to push Congress into action. The two organizations sponsored a billboard ad in New York City’s Times Square encouraging anyone who saw it, “Tell Congress. Ban Toxic Asbestos. Ban Asbestos Now.”   

Highlighting the campaign are three critical facts: there is no safe level of asbestos exposure, asbestos claims 40,000 lives in the U.S. annually, and fire fighters are twice as likely to develop mesothelioma as a result of asbestos exposure than the general population according to a NIOSH (National Institute of Occupational Health and Safety) cohort study.  

Publications like the New York Times took notice. 

In the article, IAFF General resident Edward Kelly said, “Asbestos can be released into the air during a fire and poses risks [not isolated to] inhalation. If asbestos fibers land on fire fighters’ gear, they can ride back to firehouses and eventually to fire fighters’ homes.” 

Asbestos is particularly dangerous because exposure is so easy. All it takes is a small piece of it to be inhaled or absorbed through the skin. And the latency period from the time of exposure to a diagnosis of a related disease is up to 40 years.   

“When my husband got sick, I tried to research asbestos and Mesothelioma. I was surprised how few sources of information were out there,” Reinstein said. “We faced aggressive treatment options and didn’t know where to turn. The feelings of isolation consumed us.”  

After the ADAO was created, Reinstein made sure other affected families would not have the same experience. One of her first acts was to call the public’s attention to the issue by going to Washington, D.C. to garner support from congressional leaders for the passage of an Asbestos Awareness Day Resolution.  

She found support in the late Senator Harry Reid, who sponsored the first resolution in 2005. The resolution was renewed every year for several years and, eventually, expanded to Asbestos Awareness Week, now held every April 1-7. 

The resolution calls for continued work to raise awareness of the dangers of asbestos and urges the U.S. Surgeon General to educate the public on the risks throughout the first week of April. 

Reinstein’s goals are to pass a total ban on asbestos in the United States and reform the weak federal Toxic Substances Control Act of 1976. Over the years, she has built a coalition of organizations like the American Cancer Society Action Network (ACS CAN) and the IAFF to generate support.

“Linda is tireless in her efforts to ban asbestos in the United States, urging dozens of House and Senate Offices to pass the Alan Reinstein Ban Asbestos Act,” ACS CAN Federal Relations Director James Williams Jr. said. “Linda’s moral courage, optimism, and hope has been our fuel, in the words of my former boss, Rep. John Lewis, to ‘keep the faith.’” 

The Alan Reinstein Ban Asbestos Now Act was introduced in 2017, 2019, 2021, and, most recently, 2023 after some poignant testimony by Reinstein and the IAFF. 

If passed, the legislation would prohibit the manufacture, processing, use and distribution in commerce of commercial asbestos and mixtures and articles containing commercial asbestos, and for other purposes. 

Currently chrysotile asbestos, or white asbestos, is still being imported and used in the U.S. The chlor-alkali industry utilizes it to create chlorine that is then used to disinfect drinking water. 

Additionally, the so-called “legacy” asbestos is also a threat. This is because asbestos was used for insulation and flooring, so it still exists in older buildings. Additionally, some asbestos contaminated automotive parts including brakes and gaskets are still being imported into the U.S. 

Reinstein testified about the bill before the Senate Subcommittee on Chemical Safety, Waste Management, Environmental Justice, and Regulatory Oversight. 

“On behalf of ADAO and the thousands of American families that have lost loved ones to this lethal carcinogen, the workers, their families, and the public who are continually exposed, and the hundreds of thousands who have lost their lives due to this lethal carcinogen, we urge that [this bill] be passed without delay to end the asbestos man-made disaster,” she stated. 

IAFF Chief Medical Officer Dr. Danny Whu also testified. He offered a unique perspective as he was deployed to Ground Zero after the 9/11 terrorist attacks. Fire fighters and emergency workers were exposed to large amounts of asbestos. 

“Due to the latency period, fire fighters and others who were exposed in the aftermath of the terrorist attack and subsequent collapse of the twin towers continue to be diagnosed with asbestos-related cancers and diseases,” Whu testified. “You cannot change the past, but you can prevent future tragedies by banning asbestos today.” 

The legislation was introduced by Senator Jeff Merkley and Representative Suzanne Bonamici of Oregon. It has not come to the floor for a vote.

The IAFF encourages its members to join the fight by asking their members of Congress for immediate action on this legislation: https://www.votervoice.net/IAFF/Campaigns/107902/Respond.