From Grief to Action
In 2003, Linda Reinstein’s husband, Alan, was diagnosed with pleural mesothelioma, a rare cancer of the lung lining caused by asbestos exposure.
As she coped with the grief of her husband’s diagnosis, Linda co-founded the Asbestos Disease Awareness Organization (ADAO). Her mission was to spare other families the pain of this avoidable yet devastating illness by urging policymakers to ban asbestos in all its uses.
“Asbestos isn’t a problem of the past. It’s a danger hiding in homes, schools, and workplaces today. And until it’s fully banned, I will keep fighting.”
Now, over 20 years later, Linda continues to fight on behalf of her husband, who passed away in 2006, and the millions of people affected by the dangerous carcinogen asbestos.
As part of Global Asbestos Awareness Week, we asked Linda questions about navigating the grief of losing her husband to mesothelioma and starting the largest asbestos advocacy organization in the U.S.
What was your reaction to Alan being diagnosed with mesothelioma?
After enduring 9 months of symptoms and multiple visits to doctors, Alan was diagnosed with pleural mesothelioma in 2003. I didn’t know anything about the disease, not even how to pronounce it. The learning curve for mesothelioma treatment and understanding your legal options was steep.
When the doctor told us what was going on, I was paralyzed with grief, fear, and disbelief. Our daughter Emily was only 10 — just a baby in our eyes. We were a typical American family — trusting that our government would protect our air, water, and soil from toxins — but I was wrong.
What treatment methods did he undergo? What were those like for him as a patient and you as a caregiver?
He underwent multiple surgeries and chemotherapy, including the radical extrapleural pneumonectomy (EPP), a surgical procedure that removed his left lung and lining around his heart and replaced his diaphragm. These were incredibly painful for both him and for Emily and me.
“Watching someone you love in pain is torture. That kind of grief never leaves you — it transforms you.”
While treatment gave us a few more years with him, mesothelioma is a cruel and deadly cancer. He died in 2006 with us by his side.
What’s a favorite memory about your late husband, Alan?
It’s impossible to choose a single favorite memory of someone you love and have built a life with.
But I will never forget the softness of his hand on my cheek or the gentleness of his voice, his profound wisdom, and the many adventures we shared, including marathons, skiing, and climbing Half Dome in Yosemite National Park.
Linda Reinstein of the ADAO shares how losing her husband to mesothelioma led to the drafting of the ARBAN Act, which would ban all uses of asbestos in the United States. View Transcript.
Duration: 5 min 23 sec
I’m Linda Reinstein. I’m the co-founder and president of the Asbestos Disease Awareness Organization, known as ADAO. We’re an independent nonprofit dedicated to preventing all asbestos-caused diseases. Alan was my soulmate and my forever one. We had been married for over 20 years, so when I heard a slight persistent cough, I knew something was very different. With a little bit of humor, I said, ‘Alan, you need to go in and get that checked out.’ He came home; he was checked out, but we didn’t have any answers. That was back in 2002. They thought maybe he had TB. Could he have AIDS? They went through a myriad of different tests. There was a pleural effusion on his left lung. The surgeon came out and said, ‘Are you alone?’ I knew enough to know that wasn’t a good sign. He said, ‘I think Alan might have mesothelioma.’ I’d never heard of it and couldn’t pronounce it. Still, using some humor, I guess it’s dark humor by now, I said, ‘But it’s a kind you can treat, right?’ He said, ‘I can treat it, but I can’t cure it,’ and with that, I realized that our lives were going to change. Alan was diagnosed; pathology confirmed mesothelioma. He elected to have an extrapleural pneumonectomy. They removed a left rib, resected and removed his lung. They stripped off his pericardium, the lining around his heart, and they surgically replaced his diaphragm. We called it the shark bite. He was sliced from left to right, all the way around. It was a devastating surgery. I think the anxiety from having your lung removed took Alan quite a while to even adapt. When the cancer came back on Alan’s right lung, it had been almost a three-year battle. He had chemotherapy, and the options were very limited. I’ll remember that moment like it was just yesterday. Emily was then 13, and Alan had actually been hospitalized with what they thought was aspiration pneumonia. Emily and I were heading in one rainy morning in the LA area. Emily, then 13, and I looked at Alan. He was a very different Alan. I tell the story because I want people to understand the devastation that the family and the patient have to endure. Alan had a demand mask on, covering his entire face. As we walked in, his eyes barely opened, but I could see that he was listening. Emily, at 13, tells her dad as we hold his hand, ‘Dad, you won. You’re a champ. You never gave up.’ I’m resting Alan’s fears and telling Alan that we’ll be okay. As I look to the right, the heart monitor begins to flatline. Nobody moved; they were stoic. That was the moment I knew Alan had died when the staff didn’t respond to the heart monitor. Every step that I had to learn, I learned the hard way. Saying goodbye to a father, a friend, a husband — it stinks, and it’s all preventable. I think that part of Alan’s treatment and ultimate death has fueled my fight for 20 years. I don’t want other people to have to go through what I have. I had it tough, and I’m not the only person that’s had it tough. We’ve been working for the last seven years on the Alan Reinstein Ban Asbestos Now Act. It’s named after my husband, but not for Alan; it’s for the hundreds of thousands of Alans. Anybody who has suffered or died from this disease needs to feel part of that bill. The bill would stop imports and use, which is the first step to mitigating this man-made disaster. MesoHero is just a great community event. I love Simmons Hanly Conroy; they are so genuine. After all of these years of working together and knowing the firm, I’ve developed some friendships that make it a really sweet trip out to Alton, Illinois. It’s mixed with old friends, new friends, and always a new discovery. I meet someone who usually teaches me something, and that’s an exciting part. So, MesoHero has been an amazing resource. For one, it raises awareness; you bring a community together, and we talk about our stories so they understand. They can connect the nearly invisible dust to the damages, the impact on our families. Two, we can take home facts and stats and share with others. ADAO’s mission has always been to use education, advocacy, and community to do our work. Three, the funds are remarkable. They help us to put on our annual conference, staff briefings in Washington, DC, and various other things that help us to continue our 20-year mission of preventing exposure to eliminate all asbestos diseases. I’m very honored to do this work for Alan and the hundreds of thousands of Alans. I hope everyone will join our campaign to ban asbestos now.
How did you deal with the grief of losing your husband?
People sometimes don’t know how to talk to you when you are grieving. They want to help, but they also want you to be okay within 6 to 12 months, and that’s just not going to happen.
What those who haven’t lost someone don’t understand is that it changes you forever. Cancer, suffering, and death are not something that you can ever “shake off” or move on from. The grief will be ever-present for the rest of your life, the strength of it coming and going in waves at certain times. When I first lost Alan, I was bewildered, angry, and depressed.
My daughter is the one thing that kept me focused, kept me present. Without her, I would have been lost. She and I changed together and came out the other side as different people.
Lastly, co-founding ADAO with Doug Larkin in 2004 gave my pain and grief an outlet. We are now people who are dedicated to making sure America bans asbestos so families don’t have to suffer like ours did. ADAO provides education and resources for families who are suffering and uses a dual-track method of legislation and regulation to fight for a world free of asbestos-caused diseases.
What guidance would you offer to someone newly diagnosed with an asbestos-related illness?
There are four things I tell people who learn they have an asbestos-caused illness:
- Build your medical, financial, and legal plan and share it with your loved ones.
- Surround yourself with family, friends, and medical experts.
- Invest in your self-care. I’m excited to share news of my upcoming self-care guide.
- Seek professional help as needed.
These are small steps you can take to begin to understand what you need to do.
Also, remember you are not alone. A caring community is available to asbestos victims, with many resources online and with your medical and legal team. Mesothelioma Hope has excellent free resources.
What do you wish everyone knew about asbestos?
I wish everyone recognized the deep and tragic impact asbestos continues to have on individuals and their families. Most people do not know that asbestos is still legal and lethal in America today.
Despite landmark steps being taken regarding asbestos imports and use in the 20 years since I started ADAO, more work needs to be done to fully safeguard Americans from this carcinogen.
“Asbestos doesn’t discriminate. It doesn’t care where you live or what you do for a living.”
It is critical to remind everyone that asbestos is a known carcinogen, and there is no safe level of exposure. While promising research continues, prevention remains the only cure.
Acknowledging the enduring threat of asbestos is crucial in advocating for change, which includes the need for comprehensive regulations and legislation to prevent exposure and safeguard health.
Reflecting on the past 21 years of Global Asbestos Awareness Week, what moments stand out?
Over the past two decades, Global Asbestos Awareness Week has impacted my life and the lives of so many. The shared stories of resilience and hope, alongside the concrete achievements of our advocacy efforts, hold a special place in my heart.
“I see survivors, caregivers, researchers, advocates, and even students stepping up with fierce determination and compassion. Every time someone shares their story or calls their senator, we chip away at the silence.”
Integrating art into our advocacy work has not only humanized the asbestos issue but also broadened our outreach, making the invisible horror of asbestos exposure visible to a broader audience.
Organizing annual conferences has been instrumental in uniting experts, victims, and policymakers from around the globe, fostering a robust platform for conversation and collaboration. These gatherings are not just meetings — they represent hope and progress while showcasing the power of unity and shared purpose.
Each step forward, no matter the size, brings us closer to a world without asbestos-related diseases, and every story of hope and legislative step forward echoes our mission.
What makes this year’s Global Asbestos Awareness Week especially meaningful to you?
Each year is deeply meaningful, but this is our 21st Global Asbestos Awareness Week, and that number carries weight.
It represents over two decades of relentless advocacy, personal stories, scientific collaboration, and global outreach.
What’s especially powerful this year is how we’ve integrated technology — launching our AI-powered chatbot and expanding multilingual education — so we can reach people faster and more effectively than ever before. It’s another step forward in saving lives.
How has your work evolved since the founding of ADAO?
When we started, ADAO was very small. Doug Larkin and I co-founded it, and of course, our families were right there with us. Slowly but surely, ADAO grew as more victims, families, and communities affected by asbestos joined us.
Thanks to volunteers, interns, supporters, donors, patients and their families, leadership, and our national spokesperson, Jordan Zevon, ADAO has continued to grow.
ADAO is now the largest independent asbestos victims’ organization in the United States. Our network includes over 50,000 individuals eager to live in a world without asbestos, and we hold several annual speaking engagements to educate people about asbestos exposure.
Some of our achievements include:
- Regularly speaking in front of Congress
- Challenging the Environmental Protection Agency (EPA) in court to better report asbestos contamination
- Observing every April 1-7 as Global Asbestos Awareness Week
- Launching the annual International Asbestos Awareness and Prevention Conference, which welcomes world-renowned experts and asbestos victims to share the latest in disease prevention, global advocacy, and treatment for asbestos-caused diseases
Most importantly, ADAO has worked with others to draft a comprehensive bill called the Alan Reinstein Ban Asbestos Now (ARBAN) Act to ban all asbestos fibers in all uses. The bill has the support of the House and Senate and is the most comprehensive bill put before Congress in over 30 years.
As we look forward, ADAO will continue to work toward preventing asbestos exposure and eliminating asbestos-caused illnesses by urging lawmakers to ban asbestos and supporting the community of individuals whose lives have been devastated.
Our goal is a world without asbestos and without asbestos-related diseases.
Is the EPA’s ban on chrysotile asbestos enough to protect people from asbestos?
The EPA’s decision to ban chrysotile asbestos, announced in March 2024, was an exciting landmark step forward, but it falls short of providing complete protection.
Addressing the full scope of the asbestos problem requires not just a ban on all types but also comprehensive strategies for the safe removal and disposal of existing asbestos-containing materials.
For complete safety, a total ban needs to be implemented through legislation like the ARBAN Act, and rigorous safety measures are necessary.
How can people help advocate for a global ban on asbestos?
Supporting a global ban on asbestos involves several key strategies:
- Educating others about the dangers of asbestos and correcting common misconceptions is fundamental.
- Engaging with lawmakers to advocate for bans and improved regulations is critical, as is using platforms like social media to raise awareness and call others to action.
- Collaborating with organizations like ADAO that are fighting for asbestos bans can amplify individual efforts.
- Sharing personal or loved ones’ stories impacted by asbestos puts a personal face on the issue, making it more relatable.
Together, these efforts can build a movement strong enough to effect change.
The best first step for Americans desiring to participate is to support the passage of the bipartisan Alan Reinstein Ban Asbestos Now (ARBAN) Act.
During Global Asbestos Awareness Week, what are you most hopeful for?
April 1 through April 7 symbolizes a time of unity, memory, and proactive steps toward ending asbestos use. It’s a moment to honor those lost, like Alan, and to advocate for a future free from asbestos-related suffering.
This year, I hope to see stronger global collaboration in preventing exposure and eliminating asbestos use worldwide, with more nations joining those that have enacted bans.
While promising research continues, prevention remains the only cure. I hope for advancements in medical treatments for asbestos-related conditions and, fundamentally, for policies that prevent exposure and preserve lives.
Mesothelioma Hope: Fighting Alongside Linda Reinstein
Linda’s work toward an asbestos-free future is beyond valuable. All of us at Mesothelioma Hope thank her for her dedication and vulnerability in sharing her story. Stories like hers inspire our team at Mesothelioma Hope to keep providing support and resources for victims and their families.
As Linda said, you are not alone. Whether connecting you with the best cancer specialists or providing free legal help for asbestos exposure, Mesothelioma Hope is here to provide personalized guidance and support every step of the way.
Call us at (866) 608-8933 or fill out our contact form to see how we can help.
