Mesothelioma Awareness

Fact Checked

It is important for patients, family members, doctors and others within the mesothelioma community to spread awareness about the disease. Numerous organizations and events such as the Pacific Mesothelioma Center and Mesothelioma Awareness Day do their best to raise awareness and make a difference in the lives of families affected by this rare cancer.

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“I made it my business, after Brian was diagnosed, to learn as much as I could about mesothelioma and so I started telling people about it…”
“I made it my business, after Brian was diagnosed, to learn as much as I could about mesothelioma and so I started telling people about it…”

Deaths from mesothelioma and other asbestos-related diseases are almost entirely preventable. Asbestos exposure, nearly the sole cause of these diseases, can be halted by a worldwide ban on asbestos.

Several asbestos-caused diseases are incurable and fatal. If people were more aware these diseases are preventable, they would take banning asbestos more seriously.

The history of mesothelioma shows us there were misconceptions about the disease. That’s why several organizations are working hard to raise public awareness about mesothelioma and asbestos exposure. These organizations raise money to fund medical research and advocate for a complete ban on asbestos.

For example, events such as Mesothelioma Awareness Day help increase awareness and educate the public about the dangers of asbestos exposure.

Each year, asbestos-related diseases kill more than 100,000 workers worldwide. An estimated 2,500 to 3,000 people in the United States die each year from mesothelioma.

Mesothelioma Awareness Day

Mesothelioma Awareness Day takes place annually on September 26. The day unites survivors, caregivers and loved ones to honor those affected by mesothelioma.

While the mesothelioma community has acknowledged the day since 2004, it wasn’t until 2010 that Congress first declared September 26 as National Mesothelioma Awareness Day.

The day is observed in many ways. Supporters are encouraged to wear blue and share photos on social media. Many people wear mesothelioma awareness bracelets or ribbons.

Organizations and advocates put on fundraisers and run awareness campaigns to get the word out. Events such as iWalk4Meso, Miles for Meso and Kayaking 4 Meso raise funds for research and educate the public about the health effects of asbestos.

Every sign of support means a lot to families affected by mesothelioma.

Reflecting on Mesothelioma Awareness Day

Asbestos Disease Awareness Organization (ADAO)

Founded by Linda Reinstein and Doug Larkin in April 2004, the Asbestos Disease Awareness Organization (ADAO) provides education to citizens on the dangers of asbestos exposure and advocates for legislation to ban asbestos.

ADAO hosts its annual Asbestos Awareness Conference, where patients and experts gather together and discuss new treatment options. The conference not only pays tribute to those affected with mesothelioma or another asbestos cancer, but also strives to educate the public on the hazards of asbestos.

ADAO also advocates for protecting children, teachers and faculty from asbestos in schools.

ADAO raises awareness through its “Let’s Rock” campaign, which features music from singer and songwriter Warren Zevon. It asks radio stations around the country to play Zevon’s music throughout Mesothelioma Awareness Day. Zevon passed away in 2003 from the cancer.

In 2018, ADAO launched a petition urging the Environmental Protection Agency to ban asbestos without loopholes or exemptions. More than 134,000 people have signed the petition since the start of 2019. The goal is to get 150,000 signatures.

National Asbestos Awareness Week

Asbestos Awareness Infographic
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What started as National Asbestos Awareness Day in 2005 is now National Asbestos Awareness Week, providing more opportunities to educate the public to the worldwide health problem caused by this toxic substance.

All asbestos and mesothelioma organizations observe this week, which typically occurs in the spring and is highlighted by a multiday International Asbestos Awareness Conference.

The conference, hosted by ADAO, brings together a variety of doctors, speakers and survivors to talk about asbestos issues, advancements in treatment for asbestos-related diseases and a number of other topics.

“People can make money from asbestos. That’s why it’s still being used,” said Arthur Frank, Ph.D., co-chairman of ADAO’s Science Advisory Board and chairman of the Department of Environmental and Occupational Medicine at Drexel University. “It’s hard to imagine that 55 countries are smarter than America, but it’s true. They have banned it. We have not. That says something about our politics, our approach to health and well-being, our world today.”

Prompted by a resolution from U.S. Sens. Harry Reid, D-Nev., and Bill Frist, R-Tenn., at the urging of ADAO, the first Asbestos Awareness Day was April 1, 2005. Four years later, Senate Resolution 57 and House of Representatives Resolution 1138 called for a National Asbestos Awareness Week. ADAO now calls it Global Asbestos Awareness Week.

Reid’s first resolution was especially prophetic because shortly afterward, several federal employees who worked in the tunnels under the U.S. Capitol, the Supreme Court and many Congressional official buildings nearby, were diagnosed with asbestos-related illnesses.

The heating and cooling systems within those tunnels had been coated with asbestos, serving as insulation, and the age of the material had left it brittle. Many of the employees had worked without proper safety equipment for years.

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Pacific Mesothelioma Center

The Pacific Mesothelioma Center (PMC) is a nonprofit that conducts groundbreaking research on mesothelioma treatment procedures.

PMC sponsors the annual International Symposium on Malignant Pleural Mesothelioma, which unites patients and experts to discuss new advancements in treatment. The symposium was among the first to advocate a lung-sparing surgery rather than an extrapleural pneumonectomy, which removes an entire affected lung.

Dr. Robert Cameron is lead surgeon at PMC and leader of the symposium. Cameron believes the lung-sparing surgery should be adopted as the preferred surgical treatment for pleural mesothelioma.

PMC has also researched new diagnostic tests, immunotherapies for mesothelioma and targeted therapies, which harm cancer cells but spare healthy cells.

John McNamara Foundation

The McNamara family created a foundation in memory of its patriarch, John McNamara, who passed away from mesothelioma in 2007. The foundation gives support to people affected by mesothelioma and unites the community.

Through its “Drop the Rock” campaign, the foundation raised awareness about the dangers of asbestos in serpentine rock and sought to find a suitable replacement for California’s state mineral.

In 1965, serpentine, which serves as a host rock for asbestos, was designated as the state rock of California because of the lucrative mining industry that was prevalent during the time. In 2010, as a result of dedicated efforts by the foundation and other awareness groups, a bill was introduced to remove serpentine as the state rock of California.

The bill died in committee, but the campaign educated many people about asbestos in serpentine rock.

Miles for Meso

Launched in 2009, Miles for Meso is a series of races and walks held throughout the country to spread mesothelioma awareness.

The races raise money for updated and improved mesothelioma treatment options. They’ve raised more than $250,000 for mesothelioma research.

International Mesothelioma Interest Group

The International Mesothelioma Interest Group (iMiG) is a research group that formed in 1991. It organizes an international conference on mesothelioma research that takes place every two years.

The conference happens in countries throughout the world to give researchers around the globe a fair opportunity to attend. For example, the conference has been held in Paris, Amsterdam, Cape Town, Kyoto and Chicago.

In 2016, iMiG created the iMiG Research Award to recognize work that has significance and impact on the future of mesothelioma treatment. The first recipient was Dr. Raphael Bueno for his research on genetic analysis of mesothelioma tumors.

International Symposium on Malignant Mesothelioma

The mesothelioma community gathers each year for the International Symposium on Malignant Mesothelioma. The three-day event raises awareness about mesothelioma by bringing in doctors and other cancer experts to discuss the latest advances in treatment.

While the symposium gives patients and families a place to learn more and share ideas, it also serves as an informational exchange among researchers, oncologists, surgeons and others.

Ban Asbestos Network India

One of the most outspoken advocates for banning asbestos in India is Gopal Krishna, the founder of Ban Asbestos Network India (BANI). Krishna told the International Consortium of Investigative Journalists that the asbestos market is growing at a tremendous pace, so “nobody has time for complaints.”

In 2008, Krishna demanded records on the dangers of asbestos be made public under India’s Right to Information Act, but most of the Indian public does not have access to this information.

In 2018, BANI advocated for safer working conditions for those who work on asbestos-contaminated ships. BANI continues to push the government and spread awareness in India.

International Ban Asbestos Secretariat

Many asbestos opposition organizations recognize the power of the propaganda spread by asbestos lobbying organizations and fight back by educating the public. Founded in 2000, the International Ban Asbestos Secretariat (IBAS) seeks “to counter the industry’s control of the information stream and provide a platform for victims to speak out against the injustices they have suffered.”

The IBAS website provides several resources and allows concerned individuals to follow the worldwide effort to ban the toxic mineral. The organization often works hand-in-hand with organizations in developing countries, such as the Brazilian Association of People Exposed to Asbestos and helps them reach a broader audience through its vast network.

Globally, there are more than 70 activist organizations that spread awareness about the dangers of asbestos, including:

  • Asbestos Disease Awareness Organization
  • Asbestos Diseases Foundation of Australia (ADFA)
  • Asbestos Diseases Society of Victoria (ADSVIC )
  • Asbestos Victims Association (SA) Inc.
  • Asbestos Victims Families Casale
  • Asian Ban Asbestos Network (A-BAN)
  • Associazione Esposti Amianto (AEA)
  • Right on Canada
  • Ban Asbestos Canada
  • Ban Asbestos France
  • Ban Asbestos Network Japan (BANJAN)
  • Ban Asbestos Network of India (BANI)
  • Ban Asbestos Philippines
  • International Ban Asbestos Secretariat (IBAS)
  • Associazione Famigliari e Vittime dell’Amianto (AFEVA)
  • Asociación Argentina de Expuestos al Amianto (ASAREA)
  • Associacão Brasileira dos Expostos ao Amianto (ABREA)
  • Association Belge des Victimes de l’Amiante (ABEVA)
  • Greater Manchester Asbestos Victims Support Group (GMAVSG)
  • Association Nationale de Défense des Victimes de l’Amiante (ANDEVA)
  • Asian Network for the Rights of Occupational Accident Victims (ANROAV)

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Registered Nurse and Patient Advocate

Karen Selby joined Asbestos.com in 2009. She is a registered nurse with a background in oncology and thoracic surgery and was the regional director of a tissue bank before becoming a Patient Advocate at The Mesothelioma Center. Karen has assisted surgeons with thoracic surgeries such as lung resections, lung transplants, pneumonectomies, pleurectomies and wedge resections. She is also a member of the Academy of Oncology Nurse & Patient Navigators.

Walter Pacheco, Managing Editor at Asbestos.com
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5 Cited Article Sources

  1. Miles for Meso. (n.d.). About. Retrieved from: http://www.milesformesothelioma.org/
  2. Pacific Meso Center. (n.d.). About Us. Retrieved from: http://www.phlbi.org/
  3. ADAO. (n.d.). About ADAO. Retrieved from: http://www.asbestosdiseaseawareness.org/about-adao
  4. IASLC. (n.d.). International Symposium of Malignant Mesothelioma. Retrieved from: https://www.iaslc.org/events/international-symposium-malignant-mesothelioma
  5. IBAS. (n.d.). About IBAS. Retrieved from: http://www.ibasecretariat.org/about.htm
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Last Modified July 8, 2019

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