Summary by Jessica Like, executive director of the Pacific Heart, Lung & Blood Institute, Los Angeles
Conference held at the Karmanos Cancer Institute, Detroit, MI
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 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 unacceptable.
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.
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.
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, Internationall 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.
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 here.
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.
Linda Reinstein, Executive Director and Co-founder, Asbestos Disease Awareness Organization
Reinstein presented five years of personal and organizational experience in her session “Patient Advocacy and Matrix of Care.” She focused on building a roadmap for those exposed to asbestos or diagnosed with an asbestos-caused disease. “It is all about taming chaos, making informed choices for today, the future, and for living YOUR life.”
Becoming informed and remaining organized was the theme of her presentation, which was built around the life-changing physical, financial, psychological, and psychosocial issues faced by victims. Reinstein knows first-hand that asbestos-related disease affects the entire family. She summed it by saying, “Knowledge is power, and it mitigates the trauma-induced psychological paralysis.”
Reinstein shared her “multidisciplinary team approach” for patients. “It takes an expert team to help map your plan.”
Understanding your options makes choosing and managing treatment easier. Keep your team informed and encourage collaborative efforts. Reinstein recalled how it can be a full time job managing your treatment and that you need to become your own best advocate and select a co-advocate too.
Reinstein touched on the personal documentation she developed to remain organized, which she believed help to maximize time and have productive meetings with physicians during treatment.
Built around the acronym “LIFE”, Reinstein touched on the legal, insurance, financial and end of life requests needed to build strength, understanding, and planning for the patient and family members.
Two of Reinstein’s Top Ten points from the Reinstein School of Hard Knocks were:
1. Live Life – Use your calendar
2. Accept your “new normal”
“Most importantly,” Reinstein concluded with tears in her eyes and a family photo on the projection screen, “live well, love much, and laugh often.”