 |
Asbestos Disease Awareness Organization Newsletter |  |
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
Ron and Bonnie Diana, from Hillsdale NJ, contacted ADAO in the early stages of his Mesothelioma illness as they were seeking information and support as they struggled to make sense of the disease and treatment. Ron's exposure was attributed to his past work as a carpenter and house painter in the 1970's. Ron had a home business doing herbal and nutritional consultations that emphasized Taoist and Chinese beliefs that promoted well being and improved health. Sadly Ron died in 2005 from Mesothelioma months before Kate received her Biology and Art History degrees from Vassar College. He tried valiantly to be there but they knew he was there in sprit and within in their hearts and minds. Bonnie and her daughter Kate have found that volunteering for ADAO is a way for them to be productive and positive in reaching their goal of doing whatever it takes to help raise people's awareness about asbestos issues and assisting in any way to provide support for the victims and the families who lives are affected with asbestos diseases. For the third year, Bonnie will be the 2008 AAD Chairperson and Kate our Student Representative Coordinator for our Detroit conference. Currently Bonnie is making plans for her upcoming retirement as she plans to work full time in her new studio as a landscape painter and Kate is in the process of applying to dental schools to fulfill her dream of becoming a dentist.
By Paul and Michelle Zygielbaum The Senate Unanimously Passes the Ban Asbestos in America Act of 2007 NOTE: In July, the Senate agreed not to immediately ban asbestos, but rather change the legislation to ban only asbestos containing materials and call for two National Institute for Occupational Safety and Health (NIOSH) studies written in the legislation as: Current State of Science Study and the Mode of Action and Health Effects Study. The title of the bill does not reflect the new language. ~Linda Reinstein October 4th, 2007 marked an important milestone in the battle against asbestos poisoning in the US. By unanimous vote, the US Senate passed SB 742, the Ban Asbestos in America Act of 2007. This bill, which many activists and advocacy groups have worked long and hard to realize, would bring us one step closer to banning asbestos in products in America. The bill calls for mandatory testing of products by the government to identify where asbestos is to be found, funding for medical research under the Department of Defense and civilian departments, establishment of a medical database on asbestos related diseases, and public education on these issues. The bill allows exemptions only for NASA and the military and temporary exemptions for one type of chlorine production facility and crushed stone production. The bill was authored by Sen. Patty Murray, (D-WA) and was managed by the Committee on Environment and Public Works (EPW) under Sen. Barbara Boxer (D-CA). We owe a great debt of gratitude to Senators Murray and Boxer, as well as Senate Majority Leader Harry Reid (D-NV), Senate Assistant Majority Leader Dick Durbin (D-IL), and Senator Johnny Isakson (R-GA) for their leadership and support, as well as the hard work and support of their staffs. Sen. Isakson, in particular, had the courage to cross party lines and generate support for the bill on his side of the Aisle. Their effectiveness is reflected in the unanimous vote, which followed the bill's unanimous passage by EPW. Considering the acrimonious history of asbestos regulation, litigation and legislation over decades, the unanimous votes are especially gratifying We still have to get through the House vote on the companion bill, H.R. 3339, the bills must be reconciled as to any differences, and then the President must sign the final bill into law. Then we have to support the financial appropriation and administrative actions needed for implementation. But today's Senate vote is an important and hard-won milestone on the way to ending asbestos poisoning in America. ADAO looks forward to the day when that is a reality. Thanks to everyone who has supported us along the way. We'll keep up the fight until it's done. AN IMPORTANT NOTE FROM THE ADAO SCIENCE ADVISORY BOARD By Dr. Arthur Frank and Dr. Richard Lemen When ADAO testified for passage of the Ban Asbestos Bill to the Senate Environment and Public Works Committee (EPW) and when it passed out of the EPW the bill banned all asbestos containing products (ACP). However, after the bill went out of committed and before a full Senate vote a change was made in the language of the Bill which left out the ban on asbestos containing products specifically allowing the Bill to ban only the 6 commercial forms of asbestos containing greater than 1% asbestos. The bill however, still includes a section about asbestos containing products (ACP) which states that there should not be asbestos at any detectable or known concentrations, however, as the Bill now reads it only bans ACM not ACP. This language change has weaken the Bill considerably and means that companies already selling asbestos contaminated products will be entirely free to continue this practice and will be further shielded by this legislation as the prior regulations were not widely applicable to stop the sale of asbestos containing products. Thus, the public can, and likely will, be further exposed to such products and create a false sense of security since asbestos containing products will still be legal. The ADAO would like to have the language of the Bill as it was voted out of EPW re-instated which would ban all asbestos containing products. The ADAO has also recently learned of the inadequacy of the Polarized Light Microscopy method (PLM) to identify asbestos at and below the 1% by weight level and would suggest that the PLM be augmented with TEM analysis in the identification of ACM so that less than 1% asbestos can be adequately identified. It is not the 1% by weight of asbestos that is critical, but it is the amount of respirable asbestos that is released from the 1% by weight asbestos material or product that is critical for the protection of the public. Analytical techniques exist to evaluate the release of such respirable fibers and have shown that products containing less than 1% asbestos, when disturbed, can easily exceed the short term exposure limit (STEL). It is hoped that these issues can be resolved in the House version of the Bill and agreed to by the Conference committee in rectifying the two Bills. Anything less will not be a ban on asbestos and will still allow thousands of people to be exposed to asbestos from asbestos containing commercial products.
Jones House Music Presents A Tribute To Warren Zevon with the proceeds to benefit Asbestos Disease Awareness and Research Funds Santa Ynez's famous Maverick Saloon will host a tribute to the late singer/songwriter Warren Zevon on December 8, 2007. The event is scheduled to begin at 4 PM. As well as joining together a broad range of musical talents, the event will promote and support raising research money and awareness for asbestos disease, including Mesothelioma, the disease that took Warren's life in 2003. The evening's performers include Rock and Roll Hall of Fame guitarist Mike Campbell and his band The Dirty Knobs. Campbell, a legendary guitar player appeared on several of Warren Zevon's albums including his final release, "The Wind" which Warren recorded during his illness and released just weeks before his passing. "The Wind" went on to win Grammy Awards for Best Rock Performance By A Group or Duo for "Disorder in the House" along with longtime friend Bruce Springsteen, and Best Contemporary Folk album. The emotional Grammy Awards telecast also featured a musical tribute to Warren from Jackson Browne, Billy Bob Thornton, Dwight Yoakam, Emmylou Harris, Jorge Calderon, and Warren's children Ariel and Jordan Zevon. The night will include Santa Barbara resident Kenny Edwards, a folk-rock veteran and co-founder of The Stone Poneys with Linda Ronstadt and Bryndle with Karla Bonoff. Kenny has also performed on several Zevon compositions covered by Linda Ronstadt including Carmelita, Hasten Down the Wind, and Poor Poor Pitiful Me which were not only hit singles, but spotlighted Zevon's songwriting talents. Another addition to the evening is LA based multi-instrumentalist and composer Matt Cartsonis who's written multiple scores for film, television and various commercials. Cartsonis also worked with Kenny Edwards and has the distinction of playing with Zevon on his final tour before he was diagnosed with Mesothelioma. Rounding out the evening is Warren's son, New West Recording artist, Jordan Zevon who is also the National Spokesperson for ADAO. Warren Zevon's legendary career includes over 18 albums, 2 gold records, 1 platinum record, 2 Grammy awards, an honorary presidential award from NARAS, and numerous Songwriter of The Year Awards from publications like Rolling Stone Magazine. His biggest hit, "Werewolves of London" continues to make critic lists as one of the best Rock songs of all time. Tickets will go on sale November 5, 2007 at The Maverick Saloon http://www.mavericksaloon.org/ or www.warrenzevontribute.com. Lottery tickets will also be sold at the event to raise funds for MARF and ADAO with an exciting collection of prizes and in addition to the show, tickets for a wine tasting Meet and Greet will be available for purchase. No doubt, it will be a night to remember.
By Laurie Kazan-Allen, Coordinator of the International Ban Asbestos Secretariat Congratulations to U.S. ban asbestos campaigners for the pivotal role they played in the national debate which has led to the Senate passing the Ban Asbestos in America Act. Amongst the various groups and individuals who have played a major role in securing this landmark achievement, the ADAO should be singled out. In just a few years, the ADAO has become a widely respected and authoritative body that speaks for thousands of U.S. asbestos victims. It's work has been prodigious and has included outreach programs to educate ordinary citizens, medical professionals and politicians on the continuing threat posed by asbestos in the United States. I am in no doubt that without the ADAO and their fellow campaigners, the U.S. asbestos ban would have taken at least a decade longer to achieve. The knock-on effect of an American ban on asbestos will be enormous not just at home but also in other countries which will now follow suit and ban asbestos. These bans will protect future generations from the ravages of the deadly diseases caused by asbestos. I would like to formally recognize the ADAO, its sponsors and volunteers for its leadership on this issue.
March 29 - 30, 2008 Barbara Ann Karmanos Cancer Institute Detroit, Michigan Global Mission: Call To Action To Prevent, Detect And Treat Asbestos-Related Diseases And Trauma Registration begins on December 1, 2007 The Barbara Ann Karmanos Cancer Institute, a leading comprehensive cancer center in the U.S. will be the venue of the ADAO Conference, Global Mission: Call To Action To Prevent, Detect Treat Asbestos-Related Diseases & Trauma. This event is being made possible by the co-sponsorship of the Barbara Ann Karmanos Cancer Institute, the National Center for Vermiculite and Asbestos-Related Cancers, also based at Karmanos, and the International Ban Asbestos Secretariat (IBAS). Conference participants will learn about the most advanced medical, occupational and environmental information available about asbestos related diseases. Presentations will focus on occupational and non-occupational exposure, public health and environmental aspects, early warning symptoms, treatment, trauma and end of life issues. Watch for more conference information and registration online at www.adao.us or contact AAD@AsbestosDiseaseAwareness.org.
The ADAO online Asbestos Video Library Channel (AVL), featuring the 2007 AAD conference presentations, is available online at the www.adao.us. Cosponsored by Drexel University School of Public Health and the International Ban Asbestos Secretariat (IBAS), 400 years of professional experience gather to present groundbreaking information on prevention, diction, treatment and trauma. This video library puts the important information and tools in the hands of policy makers, physicians, and advocacy groups around the world. "We built the ADAO video library to help save lives, comfort those in pain, and console those who suffer," said Richard Lemen, PhD, MSPH, Assistant Surgeon General, USPHS (Ret.) ADAO Science Advisory Board Co-Chair.
By Graham Sherlock-Brown, England "Major illnesses can have an unimaginable impact on your life effect if you do not achieve a complete recovery. I had an Extra Pleural Pneumonectomy (EPP), the removal of right lung, chest wall, diaphragm and part of pericardium, in October, 2002, to try to ward off the effects of Mesothelioma. Having recovered my quality of life to a significant extent, I feel qualified to share my life lessons. PETAL is my acronym for the five key elements that we need to consider as we live with incurable disease. For me, it is all about PETAL and having a Positive Attitude, Eating/Exercising well, Targets, Adaptability and Living your life to be part of my every day." The exercising is possibly the most important bit, frankly because it carries so many benefits by itself. It is relaxing, makes you feel good (afterwards!), helps control your weight, but perhaps most important, it gets you moving again and gets your body into shape for doing the things you used to do. The more you achieve in terms of exercise the better you feel and the more ambitious you get about pushing your limits. I can't stress this enough. Having a fit healthy body is key to just about everything we do. Have a good weekend yourself. I played my second game of hockey yesterday and it was much better than the first. I can now see the possibility of getting back to playing a game I love and which I played for forty years before my op. Some people think I'm 'amazing' doing all this but to me it just feels normal! You only have one life so you might just as well get on with it and enjoy it. If you don't try things you'll never know what you can do.
Look online for the four-part series Matrix of care: Mesothelioma as a family illness with Linda Reinstein, Executive Director of the Asbestos Disease Awareness Organization (ADAO), who will discuss: 1. Detection and Treatment: dealing with the diagnostic shock 2. Caring for the care givers: family adaptation, staying mentally and physically fit 3. Planning ahead: advance directives, wills, legal issues 4. Re-emerging into society
UCLA's David Geffen School of Medicine is the Pacific Heart, Lung & Blood Institute, dedicated to finding answers and providing help to victims of asbestos cancer. The institute, headed by Dr. Robert Cameron, surgical oncologist and director of the mesothelioma program at UCLA, is conducting innovative research on the efficacy of heat treatment for mesothelioma cancer cells. Finding new therapies and testing the efficacy of existing treatments provides a crucial link in the information chain for treating asbestos cancer. Over the last twenty-five years, Dr. Cameron has treated hundreds of mesothelioma patients and continues to be at the forefront of innovative research. He performs the pleurectomy/decortication surgery in conjunction with multimodal treatments including radiotheraphy, chemotherapy, and interferon alpha. His surgical procedure is well-known among patients and surgeons for sparing the lung and helping extend quantity and quality of life. Headed by executive director Jessica Like and staffed by researchers Nikos Hontzeas, Ph.D. and post-doctoral student Dongmei Hou, MD, Ph.D., the institute also offers outreach and education for patients diagnosed with asbestos cancer. Web: www.phlbi.org Phone: (310) 622-4960 Email: jlike@phlbi.org Address: 1615 Westwood Blvd. Suite 204, Los Angeles, CA 90024
ADAO is committed to honoring the courageous victims who have lost their fight against asbestos related diseases. Margy, our ADAO Nevada Representative lost her father to mesothelioma. In honoring his memory, she has provided a name/photo tribute website for all victims. If you would like Margy to add a photo of your loved one, please email her directly at Margy-NV@asbestosdiseaseawareness.org
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
 |
 |