A common thread that runs through each segment of the mesothelioma community – from patients and family members to physicians and treatment centers to non-profit groups and other charities and foundations – is a desire to spread awareness about the disease.
Everyone wants more people to understand that all deaths from asbestos-related diseases are preventable. Asbestos exposure, the almost-singular cause of these diseases, could have been (and can be) halted by more diligent regulation of the asbestos industry and by more moral and ethical corporate leadership by a host of companies large and small.
The overarching goals: raise money to fund medical studies, clinical trials and other cancer treatments and to eliminate asbestos – and mesothelioma – as a threat to human health. Each year, asbestos diseases claim the lives of more than 100,000 workers worldwide. An estimated 2,500 to 3,000 people in the United States die each year from a form of asbestos cancer.
Founded by Linda Reinstein and Doug Larkin in April 2004, the Asbestos Disease Awareness Organization (ADAO) provides public awareness to citizens on the dangers of asbestos exposure.
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 who have been afflicted with mesothelioma, but strives to educate the public on the hazards of asbestos.
The 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.
What started as National Asbestos Awareness Day in 2005 is now National Asbestos Awareness Week, providing more opportunities to educate the public to the world-wide health problem caused by this toxic substance.
All asbestos- and mesothelioma-related organizations celebrate this week, which typically occurs in the spring and is highlighted by a multi-day International Asbestos Awareness Conference, California. The conference, hosted by the ADAO, brings together a variety of doctors, speakers and survivors to talk about asbestos issues, advancements in treatments 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 the 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 a fire retardant, and the age of the material had left it brittle. Many of the workers there had been without the proper safety equipment for years.
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Sponsored by the Pacific Meso Center, an institution that conducts groundbreaking research on treatment procedures, the annual International Symposium on Lung-Sparing Therapies for Malignant Pleural Mesothelioma unites patients and experts to discuss the treatment of pleural mesothelioma. The symposium was among the first to advocate a radical lung-sparing treatment rather than the current preferred treatment of extrapleural pneumonectomy, or the removal of the affected lung.
Robert Cameron, M.D., lead surgeon at Pacific and leader of the symposium, endorses a new treatment procedure he developed (called pleurectomy/decortication) to be adopted as the preferred surgical treatment for pleural mesothelioma.
Citing reduced mortality rates and improved life span and lung function for patients, he believes it is the best surgical option for patients.
The McNamara family created a foundation in memory of its patriarch, John McNamara, who passed away from mesothelioma in 2007. The foundation’s goal is to bring support to people affected by mesothelioma and unite the community. Through its “Drop the Rock” campaign, the foundation raises awareness about the dangers of asbestos and seeks to find a suitable replacement for the toxic mineral.
In 1965, serpentine asbestos, one of several types of asbestos, was designated as the state rock of California because of the lucrative asbestos mining industry that was prevalent during that 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 asbestos-disease community gathers each year for the International Symposium on Malignant Mesothelioma. The three-day event, usually held in Washington, D.C., 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. It is sponsored by the Mesothelioma Applied Research Foundation (MARF), a nonprofit organization whose focus is to raise money for a cure for mesothelioma.
“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…”
– Lorraine Kember, former mesothelioma caregiver
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 MARF, and proceeds are used to establish updated and improved treatment options. Another main goal of the group is to promote a federal ban on asbestos.
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 that 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. Still, BANI continues to push the government and spread awareness in India.
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 global effort to ban the toxic mineral. The organization often works hand-in-hand with organizations in developing countries, such as Associação Brasileira dos Expostos ao Amianto (ABREA) “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:
Cara is a childhood cancer survivor, daughter of a long-term breast cancer survivor, and she knows life as a caregiver. She is also a member of the American Lung Association's LUNG FORCE leadership committee, a repeat team captain for the American Cancer Society's Relay For Life and has the Social for Health Care Certification from Mayo Clinic and Hootsuite. Cara also frequently writes for HuffPost. Read More