Non-State Actors: 21st Century Activism For Influencing Public Policy

By Linda Reinstein

Asbestos: from Magic Mineral to Killer Dust

For most activists, the commitment to influence public policy begins from personal pain. When the Larkin and Reinstein families’ loved ones were diagnosed with a preventable asbestos-caused cancer called mesothelioma, we had never heard of the disease and could not even pronounce it. The learning curve was steep, the surgical treatment was radical, and we learned that mesothelioma was aggressively deadly.

Within months of our family members’ diagnoses, it was abundantly clear to us that civil society must assume a stronger role politically, economically, and socially to eradicate this man-made public health crisis. We realized that high standards of responsibility, accountability, and transparency were essential to changing international public policy. In 2004, we founded the Asbestos Disease Awareness Organization[1] (ADAO) and our interwoven initiatives were focused on education (to reduce and eliminate exposure), advocacy (to shape policy and protect civil rights), and community (to reduce isolation and build a grassroots organization).

Creating and sustaining a grassroots international organization requires both human and financial resources that for most non-state actors (NSAs) are challenging. Primarily powered by volunteers, our diverse core of supporters and a set of strategic alliances have allowed our organization to grow exponentially. Funded by individual donors and conference sponsors, there is no quid pro quo. In order to maintain our independence and credibility, ADAO does not make medical or legal referrals.

Asbestos: The Irrefutable Facts

Asbestos is a known carcinogen. There is no safe level of exposure, and Americans remain at risk. It is a naturally found mineral that was commonly used by commercial manufacturers and builders until the 1980s. Because of its wide usage, asbestos can still be found in ceilings and insulation, light fixtures, electrical wiring, tile floors, shingles and roofing felt, siding and cladding, fireplaces, and brake pads. When asbestos fibers are inhaled or ingested, they can cause asbestosis, non-malignant pleural disease, and cancers such as mesothelioma (cancer of the lung lining), lung, gastrointestinal, laryngeal, and ovarian. The latency period from exposure to diagnosis can range from 10 to 50 years.

Globally, the World Health Organization (WHO) estimates that 107,000 people die each year from asbestos-caused diseases.[2] In 1906, Dr. Montague Murray[3] was the first expert to cite asbestos as a cause of death, yet mining and usage continued. Although there were advances in policy in the 1970s with the passage of the Occupational Safety and Health Act of 1970,[4] the Clean Air Act of 1970,[5] and the Toxic Substances Control Act of 1976 (TSCA), [6] usage of asbestos in buildings and manufacturing continued. U.S. Geological Survey (USGS) data confirms that from 1900 to the present, we have used more than 31 million metric tons of asbestos. Use of asbestos in the U.S. has declined over the years, but without legislation banning asbestos,[7] imports and exports continue today.

Education

Traditionally, trade unions have been the strongest advocates for occupational health and safety prevention and policy; however, non-profits have recently become more vocal. Our organization’s initial primary focus was to establish a website presence to articulate our mission and vision, and to share resources.  Recognizing the power of new media, we began developing a robust communications strategy to have our message heard, felt, shared, and remembered.

Our public affairs strategy originated from our education initiative, which began through research in which we identified data gaps, stagnant policy, and social media advocacy potential. As technology advanced and price per device decreased, worldwide access to the Internet increased. For nimble and fiscally solvent organizations, we witnessed a shift in power, efficiency, and efficacy.

Above all, the greatest factor in the growth of our impact since ADAO was founded has been the digital revolution. In 2013, the Pew Foundation stated that “91% of U.S. adults own a cell phone; 56% of U.S. adults own a smartphone.”[8] Recognizing the potential of mobile technology, ADAO developed a mobile app to expand our ability to connect and share. Infographics have enabled us to translate complicated data into a story that is easily understood and shared in the U.S. and abroad. With the use of social media platforms, ADAO has been able to strategically connect and share educational, advocacy, and community information around the world, in turn fostering an online community of asbestos-affected individuals.

Community

New media has changed how our society reads, perceives, and distributes news. Armed with digital storytelling and social media advocacy, ADAO builds communities unbound by traditional borders and restrictions. Language barriers are nearly nonexistent thanks to many online platforms which have enabled ADAO to develop transnational relationships, such as Google Translate and built-in translation features in blogs. In addition, citizen journalism allows ADAO to make or use news to increase readership and reach lawmakers, media, and scientific communities. In 2006, Twitter became a vast network for the distribution of real-time news and information.[9] With social media analytics, we can be responsive to our strengths and weaknesses in order to maximize our policy efforts.

One of ADAO’s greatest successes has been creating a global community with international strategic alliances in nearly 20 countries with civil societies, unions, non-governmental organizations, the private sector, and governments.  Our ability to shape policy is strengthened by joining coalitions in order to prevent toxic chemical exposure[10] and to fund cancer research.[11]

During the past decade, ADAO has organized ten international conferences and videotaped presentations to be shared around the world. In 2014, more than 100 people from ten countries attended ADAO’s annual conference that was also live-streamed around the world. Education, coupled with advocacy, leads to change.

Advocacy

When ADAO was first founded in 2004, we immediately began requesting and scheduling Congressional and White House meetings. We expanded rapidly, advocating for national and international asbestos bans, workers safety initiatives, and educational programs. As an independent non-profit organization, we serve as a frequent Congressional witness and a resource for the media. As our community initiative has grown stronger, so has our ability to advocate.

For ten years, in response to ADAO’s request and efforts in drafting language, the U.S. Senate has passed Asbestos Awareness Week Resolutions[12] for the week of April 1-7, which quickly expanded to become Global Asbestos Awareness Week. Concurrently with our conferences, these bipartisan Resolutions blend education, advocacy, and community. Building on education, we have strengthened our Senate Resolutions with language urging the U.S. Surgeon General to issue a public health warning, which has been done in 2009, 2013, and 2014.[13]  In 2014, Acting U.S. Surgeon General Boris Lushniak delivered our conference keynote address in Washington DC.

Undeniably, individual voices shape policy and influence action, most effectively at Congressional meetings, hearings, and staff briefings.[14] Asbestos victims share their experiences through stories and photos, transforming anonymous statistics into the real lives and deaths of innocent people. In the case of a debilitating disease like mesothelioma, many victims around the world are homebound, not knowing anyone else who shares their experience. ADAO takes their voices, even when they are struggling to breathe, to places they can no longer go—that is, to influence international public opinion and lawmakers.

The founders of ADAO have never forgotten that our organization grew from our own desire for a supportive community that did not exist when our family members were diagnosed. Enabling victims, patients, and families to  “turn anger into action” has strengthened our reach. We use the united voices of our specific public—people affected by asbestos—to shape international public opinion. Leveraging social media advocacy efforts, ADAO has become a leader and presenter in conferences such as the Global Health and Innovations Conference,[15] held at Yale University. This allows us to share our techniques, core beliefs, and guiding principles to encourage other public health education and advocacy organizations to influence public policy.

Both the Larkins’ and the Reinsteins’ loved ones lost their mesothelioma battles, but with the advancement of 21st century digital activism, we continue to see new and innovative educational, advocacy, and community opportunities to influence global public health policy.

References and Notes


[1] Asbestos Disease Awareness Organization. Web. March 12, 2014.

[2] “Occupational Health – Asbestos–Related Diseases.” World Health Organization. 2014. Web. March 12, 2014.

[3] Cooke, W.E., M.D. “Pneumokoniosis Due To Asbestos Dust.” Wiley Online Library.  Journal of the Royal Microscopical Society. Vol. 47, Issue 3, 232-238, Sept. 1927. Web. March 12, 2014.

[4] “OSH Act of 1970.” United States Department of Labor, Occupational Safety & Health Administration. Web. March 12, 2014.

[5] “Clean Air Act.” United States Environmental Protection Agency. Web. March 12, 2014.

[6] “Summary of the Toxic Substances Control Act.” United States Environmental Protection Agency. Web. March 12, 2014.

[7] “Worldwide Asbestos Supply and Consumption Trends from 1900 through 2003.”  United States Department of the Interior, U.S. Geological Survey. Web. March 12, 2014.

[8] “Cell Phone Ownership Hits 91% of Adults.” Pew Research Center. June 6, 2013. Web. March 12, 2014.

[9] Hermida, Alfred. “Tweets and Truth: Journalism as a Discipline of Collaborative Verification.” Journalism Practice (2012). Web. March 12, 2014.

[10] Safer Chemicals, Healthy Families. Web. March 12, 2014.

[11] Deadliest Cancers Coalition. Web. March 12, 2014.

[12] S.Res. 336: A resolution designating the first week of April 2014 as “National Asbestos Awareness Week.”. GovTrack.US. Web. March 12, 2014.

[13] “Statement by the U.S. Surgeon General Dr. Regina Benjamin on National Asbestos Awareness Week 2013.” April 1, 2013. U.S. Department of Health & Human Services. SurgeonGeneral.gov. Web. March 12, 2014.

[14] Asbestos Disease Awareness Organization. Linda Reinstein, ADAO President/CEO and Co-Founder. Web. March 12, 2014.

[15] “Global Health and Innovation Conference April 21-22, 2012 – Conference Schedule.” Web. March 12, 2014.

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