Linda Reinstein’s story is one of adversity, transformation and hope. Currently, she is the President and CEO of the Asbestos Disease Awareness Organization (ADAO), the largest advocacy group for asbestos victims. She routinely serves as a congressional witness and speaks around the world about the science underpinning the dangers of asbestos.
But it wasn’t always this way — at the time of her husband Alan’s mesothelioma diagnosis in 2003, Linda knew nothing about the disease. As she educated herself and began to educate others, she grew to understand that knowledge, when coupled with action, can lead to change.
Armed with this simple recipe, Linda has spent the last 15 years building a coalition of lawmakers, scientists and families who demand an asbestos-free future for the world. Simmons Hanly Conroy is proud to recognize Linda Reinstein during Global Asbestos Awareness Week (GAAW).
Without her hard work, there would be no GAAW at all.
Alan’s Sickness Becomes Linda’s Call to Action
For many years, Linda and her husband Alan had a relatively carefree life. They lived in Manhattan Beach, California and ran marathons together. In time, they raised a bright and healthy daughter. Alan, however, was developing a persistent cough. It didn’t seem like much to worry about, but when he started to lose weight, Linda asked him to get checked out by a doctor — just to be safe.
What followed were months of confusion, tests and misdiagnoses. Finally, a surgeon told them that Alan had mesothelioma, a cancer that develops in the lining of the lung(s) as a result of exposure to asbestos.
“Like every other person,” said Linda in a 2010 TEDx talk, “I had never heard of mesothelioma, I couldn’t pronounce it, and worse yet, I found that there was no cure.” At the time of diagnosis, the family was told that Alan had 6-12 months to live. Their daughter was just 10 years old.
Linda set out to learn everything she could about mesothelioma and other asbestos-related diseases. The year was 2003, and online information about asbestos was scarce. There were limited government resources to help her, and she was surprised to find that much of the solid information she found came from plaintiffs’ groups.
“We faced aggressive treatment options and didn’t know where to turn, the feelings of isolation consumed us,” said Linda. “So, looking back, I’m grateful for those plaintiff websites that shortened my learning curve.”
The truth is that, for many years, the only people fighting for victims of asbestos exposure were attorneys.
By 2004, Linda had newfound knowledge about asbestos, but that did nothing to help Alan. He elected to have surgery in order to spend more time with his family. He learned to live with one lung, but everyone knew it would only delay the inevitable. What was next for their family?
The First of Many Trips to Washington on Behalf of Asbestos Victims
Emily, their daughter, suggested that she and her mother go to Washington D.C. and speak directly to their senators about her father’s suffering. It was the perfect spark of inspiration for Linda. In the nation’s capital, they spoke with lawmakers and discovered there were a lot of people affected by asbestos. They began to wonder: Were asbestos-related diseases rare, or really just underreported?
From that moment on, Linda dedicated her life to reducing asbestos exposure and to helping those for whom it is too late. Along with the late Doug Larkin, another man who watched his father-n-law succumb to mesothelioma, Linda founded ADAO. Asbestos exposure had reduced their loved ones to frail beings. There was no hope of a return to normal life, but they could fight for a better future.
ADAO and an Asbestos-Free Future
In many ways, ADAO seeks to provide every victim and his/her family with what Linda didn’t have when Alan received a mesothelioma diagnosis: information, support and a sense of community. The cancer remains incurable, but victims are no longer in the dark because of people like Linda. They know they are not alone.
ADAO started small but in the last 15 years has grown into an influential organization that pushes for the worldwide eradication of asbestos-related diseases. To accomplish this goal, ADAO focuses its efforts in three interrelated areas:
- Education: As Linda always says: the only cure for mesothelioma is prevention. ADAO’s Science Advisory Board makes accurate information about asbestos accessible to everyone with access to the internet. Linda and other members of ADAO present at events around the world and host their own annual conference. Although there are promising developments in cancer research, the best way to prevent mesothelioma is to prevent asbestos exposure. The more people who are aware of asbestos risks, the fewer will be hurt.
- Advocacy: For too long, victims of asbestos-related diseases did not have a voice in Washington. Because of Linda, ADAO is now well-known there. Linda has testified before both houses of Congress and before many other key policymakers. The name of the Alan Reinstein Ban Asbestos Now Act of 2019 (ARBAN), which has been introduced in both the House and the Senate, bears testimony to Linda’s determination to find justice for her husband.
- Community: ADAO supports victims in their darkest moments. Remembering the loneliness and confusion she felt after Alan was diagnosed, Linda has worked hard through social media and storytelling campaigns to create a caring network of people whose lives have been torn apart by asbestos. Linda has left her mark on many important community events like Mesothelioma Awareness Day, the Miles for Meso run and Global Asbestos Awareness Week.
Following Linda’s Lead
So much of asbestos prevention depends on awareness. Someone can live a healthy life and have it altered in an instant if they are not aware of the risks posed by asbestos. Linda is always busy using social media to raise awareness about asbestos and to advocate for victims. You can follow her on:
In addition to following the work Linda is doing, she encourages people to raise awareness and advocate for change on their own. Call your legislators and tell them to support ARBAN and an asbestos-free future for America and the world. ADAO provides online resources to help people make a difference. Follow the online conversation through Twitter by following @SimmonsLawFirm and @Linda_ADAO. Remember to use the #2019GAAW.
Editor’s Note: This is Day 1 in Simmons Hanly Conroy’s “7 Reasons for 7 Days” blog series, in which we honor the lives of men and women who have fought bravely against the scourge of asbestos. This series is part of an overarching effort to recognize and build awareness about the dangers of asbestos during Global Asbestos Awareness Week. Follow along with the conversation online with the hashtag #2019GAAW.