ADAO 4th Annual Asbestos Awareness Conference, March 28-30, 2008
The turnout of medical specialists, scientists, advocates, and victims of asbestos at the 4th Annual Asbestos Awareness Day conference at Karmanos Cancer Institute in Detroit, Michigan, March 28-30, 2008, ensured the conference was nothing short of success. The theme of advances to prevent, detect and treat asbestos-related diseases and trauma was well represented by the array of presentations focusing on the most promising advances in science, practical advice patients can use to enhance treatment management, to developments in the Ban Asbestos Act.
Discussions flowed into the hallways following presentations as doctors concurred with advocates on the need to completely ban asbestos and push for better legislation. Jessica Like, executive director of the Pacific Heart, Lung & Blood Institute, offers summaries and her own input below. Full conference materials should be available in the near future so check back in the upcoming weeks.
Agenda Schedule
Session 1: Introduction
Linda Reinstein, ADAO Executive Director and Cofounder
Welcome – View the Speech
Richard Lemen, PhD, MSPH Assistant Surgeon General, USPHS (Ret.), ADAO
Science Advisory Board Co-Chair
Opening Address: History of Asbestos Disease and Preventing Exposure Prevention is the Best Cure!
Dr. Lemen’s speech discussed the varieties of asbestos fibers with a specific focus on the Thetford Mines in Canada that produced 50 millions tons of chrysotile asbestos yielded from the veins of crushed rocks. Chrysotile asbestos has been dubbed the “safe asbestos” yet Dr. Lemen pointed to new studies that show tremolite contained chrysotile causing new mesothelioma cases. Dr. Lemen suggests that beyond the contamination theory, there may be an underlying reason as to why mesothelioma may in fact be caused from pure chrysotile.
Many treating specialists understand that mesothelioma originates on the pleura, not in the lung. Dr. Lemen speculates that mesothelioma may be caused from chrysotile, the type of asbestos fiber that clears the lungs instead of amphibole fibers which can be seen to remain in the lung upon inspection. Dr. Lemen asks if chrysotile is causing mesothelioma outside of the lung or are amphiboles (which account for 5% of asbestos fibers) causing mesothelioma from inside the lung? Furthermore, chrysotile can often be found throughout the body in multiple locations, even in the urine of some patients. He added that no study of which he is aware shows that chrysotile does not cause mesothelioma.
Dr. Lemen ended his speech with his input on the Ban Asbestos Act which currently allows up to 1% of asbestos by weight & is currently a common adoption of corporations who use asbestos. Dr. Lemen staunchly supports a total ban as asbestos affects people in many ways: it destroys individuals and families and causes a wide range of diseases and side effects – more than just mesothelioma and asbestosis.
Session 2: Diagnosis and Treatment:
Michael R. Harbut, MD, MPH, FCCP CoDirector, National Center for Vermiculite and Asbestos-Related Cancers Karmanos Cancer Institute
Non-malignant ARD (Asbestos-Related Disease)
Dr. Harbut summarizes some of the challenges faced by the medical community in treating mesothelioma. He ironically points out that when patients present with other common diseases or cancers yet do not have the tell-tale symptoms of those diseases, they are still treated for the disease. However, legally if someone has an asbestos-related disease without asbestos exposure, the patient has no disease. From a medical standpoint if a patient has an asbestos-related disease with no asbestos exposure, this presents a “challenge.” Dr. Harbut’s point is that patients must be treated for the disease they have, regardless of legal ramifications.
He further stated some of the other medical problems for ARDs such as the inaccurate techniques to measure plaque value and the still forward movement in locating biomarkers other than osteopontin and SMRP. Dr. Harbut mentioned the research of which they are capable of producing such research into biomarkers is largely due to their database on asbestos diseases which dates back to the 1980s.
John C. Ruckdeschel, M.D., President and CEO, Karmanos Cancer Institute
Malignant ARD (Asbestos-Related Disease)
Dr. Ruckdeschel’s presentation focused on the current barriers to successful therapies:
- Medical community nihilism (i.e. pulmonologists tell patients nothing can be done)
- Quick fix interferes with novel therapies (i.e. talc pleurodesis)
- Lack of centers with documented track records for treatment of disease (i.e. more multimodal centers for treatment around the nation)
- Lack of large, standardized trials
- Paucity of research institutions (perhaps something that could be remedied by the Ban Asbestos Act)
Dr. Ruckdeschel points out the need for new combinations of chemotherapy and maintenance therapy and echoes Dr. Robert Cameron’s long standing sentiment that Alimta/Cisplatin chemotherapy should be administered in conjunction with a multimodal treatment plan and that the FDA approval of Alimta is almost criminal and administration perhaps unethical.
Dr. Ruckdeschel goes on to discuss the major surgeries of Pleurectomy with Decortication v. Extra Pleural Pneumonectomy and acknowledges that the PD brings better results overall, that neither are beneficial without full cytoreduction, but then ends with stating that their team still believes the EPP is preferable for younger patients (the last comment a point with which Dr. Robert Cameron highly disagrees).
Rebecca J. W. Cline, PhD, Senior Scientist, Barbara Ann Karmanos Cancer Institute, and Associate Professor of Family Medicine and Public Health Sciences, Wayne State University
Psycho-Social Impact of ARD (Asbestos-Related Disease)
Dr. Cline and her team spent much time with Libby, Montana residents discussing the impact of the ARDs which have torn apart the community. She came away with valuable insights on how patients and those without ARDs view themselves. Most significantly, the stigma of ARD is equivalent to HIV for the Libby residents. They are embarrassed to speak of it with each other and the most appropriate example for this is the scenario of two women who had been best friends for 20 years who had never told each other they had been battling ARDs for 5 years, until they met in the clinic on the same day.
Linda Reinstein, ADAO Executive Director and Cofounder
Patient Advocacy and Matrix of Care
Linda Reinstein, Executive Director and Co-founder of ADAO, shared five years of personal and organizational experience in her session “Patient Advocacy and Matrix of Care.” By focusing on building a roadmap for those exposed to asbestos or diagnosed with an asbestos-caused disease, she comforted the audience by letting them know, “It is all about taming chaos, making informed choices for today to make the future easier, and living YOUR life.” The message struck home for the audience filled with doctors, scientists, advocates, and families coping with the decision-making process.
With the array of life-changing issues that victims face (physical, financial, psychological, and psychosocial), becoming informed and remaining organized is paramount. Reinstein knows first hand that asbestos-related disease affects the entire family and says, “Knowledge is power and mitigates the trauma-induced psychological paralysis.”
Reinstein shared her “multidisciplinary team” approach for patients. “It takes an expert team to help map your plan.” Patients should keep their team informed and encourage collaboration with other specialists. Understanding available options allows patients and their families to choose and manage treatment more effectively. Patients should keep this in mind no matter what stage of treatment they are undergoing.
Likening her own experience managing treatment to a full time job, she suggested patients are their own best advocates. But patients shouldn’t be expected to go it alone; select a co-advocate too. Utilize friends and family who often want to help but may not know what is needed. Reinstein offered great tools built on her own experience. Most significantly she stressed how easy it can be to take a friend’s offer to help. Let them know if a child needs a ride to or from school, or if a chemotherapy session will run late on Wednesday, request dinner. Do you need a ride to the doctor’s office? Give friends and family specific tasks so that they feel helpful and relieve the burden from the full-time care giver.
Reinstein also shared the acronym “LIFE”, which represents the Legal, Insurance, Financial, and End-of-life requests that patients and family members need to address in order to build strength, understanding, and plan for the future.
Top Ten points from the Reinstein School of Hard Knocks were:
Remain informed and organized- Trust your instincts
- Join a network of patients or caregivers
- Designate a 2nd advocate
- Live Life – Use your calendar
- Accept your “new normal”
- Build your expert medical team
- Understand your insurance coverage
- Evaluate your finances and legal documents
- Talk about your fears – to your spouse, family and friends. Ask them to share theirs too.
“Most importantly, Live Well, Love Much, Laugh Often”, she said with tears as she concluded with a family photo. Certainly a practice we should all take to heart.
Warren Teel, M.D., Consultant Physician Occupational Health Clinics for Ontario Workers, Sarnia-Lambton
Pleural Plaques eh? A Canadian Experience Dealing with Asbestos-exposed Workers
Dr. Teel warmed the crowd with his good humor before delving into the increasing problem of ARDs in Canada, specifically in Sarnia, a city in Lambton County, otherwise known as Chemical Valley. More ARDs occur in Lambton than any other county in Canada, and drastically so.
Dr. Teel’s team works to identify work-related diseases and to bring awareness of these diseases to locals and to the rest of Canada. He remarks that despite research on biomarkers, no definitive data exists (regarding osteopontin or mesothelin), so instead they take an active approach with those highly exposed to asbestos by sending them to get yearly scans. So far, they have been able to help a handful of patients get early treatment because the scans have found the disease in beginning stages. Yet, Dr. Teel points out some of the problems with this method, including potentially extensive radiation to patients.
Terry Lynch, Int-l Vice President, Political & Legislative Director/Health Hazard Administrator, Insulators Union
Mesothelioma and the Asbestos Workers: Father, Spouse, Contemporary and Daughter. A Short Story of Their Exposure and Disease
PHLBI’s Director, Terry Lynch, opened with praise for the key figures in the ban asbestos movement, from doctors, to advocates, lawyers to legislators. Mr. Lynch went on to describe the impact of asbestos on his own family and called again for a complete ban on asbestos because there is no safe level of exposure. To illustrate, Mr. Lynch referenced the potential for another entire generation of exposed people if the proposal to burn asbestos-laden buildings in New Orleans is followed through upon or if the “wet-method” experiment in Fort Worth, Texas in December 2007 were expanded.
Mr. Lynch discussed his union’s moral obligation to keep their workers safe and extends this to all citizens. He mentioned that their union no longer uses asbestos in any of their trade work and has in fact changed their name from the Asbestos Workers Union to the International Association of Heat and Frost Insulators and Allied Workers. Mr. Lynch’s speech dovetailed into a moving story about other families ripped apart from asbestos and laments the fact that others could continue to experience such devastation if the Ban Asbestos Act is passed. To illustrate the point succinctly, under the revised language, a 50 lb bag of cement (a commonly used product by workers) could contain half a pound of asbestos by weight under this so-called ban. Such legislation serves to legalize asbestos. View the presentation.
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Session 3: North American Action on Asbestos
Brad Black, MD, Medical Director, Center for Asbestos Related Disease (CARD)
Card Clinic & Community Action in Libby
Dr. Black dedicated his services to asbestos exposed persons in Libby, Montana and eight years ago opened the Center for Asbestos-Related Disease in Libby, known as CARD. CARD health services for residents, community awareness and clean-up, and research upon the population. Dr. Black laments that no database has yet been opened, but they are hopeful to have a database next year. CARD further provides a baseline risk assessment for the EPA.
Dr. Black presented the devastation of asbestos on Libby through a slide show of the many exposure sights, including baseball fields, fishing spots along the river, the crushed rock available for residents to take home and use as desired or for children to play upon. Further environmental exposure is found in the local golf course which has not received enough funding for clean-up and they continue to find new spots with rocks containing asbestos. Of Libby’s population of 10,000, 31 mesothelioma patients have been diagnosed in the last 8 years with at least 9 from environmental exposure alone. Libby is a tragedy yet it remains secluded with little attraction from the national government.
Aubrey Miller, MD, MPH, Senior Medical Officer & Toxicologist, Environmental Protection Agency (EPA)
EPA (NOA and Superfund Sites)
Dr. Miller presented a moving and deeply insightful presentation on public health issues and concerns regarding asbestos in the environment. He points out that centuries of public recognition still has not led to public health action. Dr. Miller has largely been outspoken on a need for a complete ban on asbestos and asserts the problems with the language on the current legislation allowing up to 1% asbestos by weight.
In studies, the EPA has monitored personal exposure verse environmental exposure. Allowing up to 1% asbestos by weight leads to greater personal contamination (as they found through personal monitoring gear) than just the asbestos found in the air. In El Dorado, California, workers demonstrated this theory by while wearing masks through the bike hills where asbestos is known to be found in the environment. The difference between the airborne environmental exposure and individual personal exposure was great and illustrates the need for further reform. He points out that because technology can now smaller quantities of asbestos exposure, essentially less than 0%, we should not accept a ban that does less than this. All fiber types contribute to ARDs and therefore these diseases need to a health concern for the EPA.
Dr. Miller’s presentation ended with a video of a worker trying to remove asbestos-filled insulation from an attic. Upon disturbing the material, large amounts of dust were released into the air. This video should be seen by anyone who doubts that up to 1% asbestos allowed in products is acceptable.
Paul Zygielbaum, ADAO Project Manager and Mesothelioma Patient
ADAO Product Testing Report
Mr. Zygielbaum updated the audience on ADAO’s testing of commercially available products that were found to contain asbestos. Full results are available: http://asbestosdiseaseawareness.org/eLibrary/PressReleases/11.28.07.pressrelease.pdf.
Mr. Zygielbaum furthermore discussed that the general public believes that asbestos is a banned product and is disappointed that legislators treat asbestos as old news. ADAO funded the product testing which had major impact including press coverage, stop sales of the CSI fingerprint kit, congressional attention, public awareness, and further information on the state of asbestos in the US. He echoes the sentiment that the current legislation or so-called “ban” legitimizes asbestos. ADAO's test results and the Planet Toys fingerprint kit, in particular, drew the subcommittee's attention and greatly strengthened the position of advocates of a complete ban.
John Thayer, Former U.S. Capitol Tunnel Worker Supervisor
2008 Update: Asbestos Under the Steps of the U.S. Capitol
John Thayer was the supervisor for the workers beneath the Washington, DC tunnels for over ten years (a tunnel system which has existed for over 100 years). Mr. Thayer described the conditions in the 6 mile + stretch of asbestos-laden tunnels where workers spent long hours in 120 – 160 degree heat without fans so as not to disturb the asbestos and prevent public exposure.
In the meantime, Thayer and his men were being exposed to large amounts of asbestos and working in terrible conditions. Though Mr. Thayer tried the appropriate avenues of letting his superiors know about the conditions, including several citations to clean up the area, his efforts were ignored and met with no response from upper management. Mr. Thayer finally decided to go public with the information in order to find some resolution. He was fired. All ten of his employees have been forced to find different work and many are back in school learning a new trade. They all have health problems now. Mr. Thayer has severe scarring of lungs and indeed had this scarring years ago though his doctor never informed him of his findings. Mr. Thayer now lives in another state until he can finish his schooling and rejoin his family.
Session 4: Global Contamination and Advocacy
Barry Castleman, ScD, Environmental Consultant
U.S. Developments: Legal/ Judicial
Dr. Barry Castleman is without doubt the utmost authority on asbestos – its use or rather abuse – and its hazardous effects on humanity. Dr. Castleman quickly summarized the developments on the Ban Asbestos Act which was unanimously passed through the Senate in October 2007. What later came to light were significant changes amounting to asbestos allowance in products up to 1% by weight and providing no limitations on liability for those companies using asbestos in products. Giving the audience some enlightenment on the legislative process, Dr. Castleman speculated that the bans changes may have appeased the committee in charge of sand and gravel amongst other appeasements in order to pass unanimously.
He reiterated the need for reasonable substitutes to be enacted quickly and better analysis to determine the presence of asbestos. In a humorous aside to the audience, Dr. Castleman asked for any insight on two specific lines in the ban which apparently have everyone baffled as to what the language actually means. Due to time constraints, Dr. Castleman summarized his points quickly and it was unfortunate there was not more time to hear his opinions on the ban.
Dr. Bishakha Ghose, Head, Department of Community Medicine BGC Trust Medical College Chandanaish Chittagong, Bangladesh
Asbestos in Shipbreaking: A Deadly Reality in Bangladesh
US citizens have a reputation from remaining unaware of how our actions affect people throughout the world. Dr. Ghose brought the message home to us as she discussed shipbreaking, a common job for workers in Bangladesh which brings retired ships into the shallow harbors and ports in order to slowly break them apart and reuse the materials. Images of shoeless workers with white dust up to their knees and in their hair standing on beaches in front of ships whose hulls had been cracked apart by the workers flew across the screen.
Clearly these laborers who perform no easy task are largely exposed to asbestos, but Dr. Ghose informed the audience that the country does not acknowledge asbestos-related diseases and maintains that the work is safe and good stimulus for the economy. More emphasis should be placed on the far-reaching affects of asbestos products. We may be well aware of first-hand and second-hand exposure to smoking but with asbestos, everyone who comes into contact is at risk – first, second, third, fourth-hand exposure, etc. is just as deadly.
Robert Jones, Environmental Researcher Rhodes University
Trail of Tears: South African Communities at Risk from Environmental Exposures
A few years ago Robert Jones transplanted his family from Maryland to South Africa, a mid-life crisis he jokes. But Mr. Jones decided to study and bring awareness to the environmental exposures South African communities are facing with asbestos.
Poignant pictures of small children in asbestos-laden schools, walking along asbestos-contaminated roads, to return home to their asbestos-filled homes highlighted the health risks many of these communities face. Crocidolite, blue asbestos, is visible among the paths that locals use daily. The rampant asbestos contamination (strewn across thousands of square kilometers) is due in part to the poor containment strategies of local mines and also the inadequate planning of local communities. As an example, Mr. Jones referred to a school with known asbestos contamination that was slowly deconstructed brick by brick, scattered among the soil which was the site of the new school that took its place, hardly effective removal of the asbestos from that environment.
Mr. Jones is working with the community to create a safer environment and a better knowledge of the extant of the environmental hazards.
Laurie Kazan-Allen, Coordinator, International Ban Asbestos Secretariat
Global Panorama 2008
It would be impossible to miss the energetic Laurie Kazan-Allen anywhere, and she was in her element at the conference. Ms. Allen is the Coordinator for the International Ban Asbestos Secretariat, providing a conduit for information exchange between groups and individuals working to achieve a global asbestos ban and seeking to alleviate the damage caused by widespread asbestos use.
Quick to point out how asbestos industries have controlled the information on asbestos-related diseases, Ms. Allen quoted an article where an industry employee reiterated that asbestos does not cause health problems. Her passion to raise awareness about asbestos and the despicable actions by companies who knowingly cover up the harmful effects of asbestos is unmatched.
Ms. Allen works tirelessly to bring about a global ban and she updated the audience on a recent successful conference in Brazil where she was instrumental in bringing groups together to discuss the problems of asbestos and brainstorm solutions. She praised the work of Dr. Barry Castleman, as well, a well established authority on asbestos and outspoken advocate who may be glimpsed at any asbestos conference around the nation. Ms. Allen’s latest compilation, “Killing the Future: Asbestos Use in Asia” exposes the far reaching devastation of asbestos throughout Asia and is an eye-opener for anyone who has never stopped to wonder what happens to asbestos-contaminated products circulated throughout the world or sent abroad to be destroyed.
2008 Asbestos Awareness Day Honorees
Since 2005, ADAO has honored those who make significant impact on society. This year's remarkable list includes:
Dr. Barry Castleman: Selikoff Lifetime Achievement Award
Dr. Aubrey Miller: Tribute of Hope Award
Canadian Auto Workers: Tribute of Unity Award
John Thayer, Former US Capitol Tunnel Worker Supervisor and Asbestos Victim: Tribute of Inspiration Award
John McNamara, Honored Posthumously: Alan Reinstein Memorial Award
