Please remember the Asbestos Disease Awareness Organization (ADAO) 9th Annual International Asbestos Awareness Conference is currently underway in the nation’s capital, Washington, D.C. More than 30 speakers from seven countries will gather to present the latest information about “The Asbestos Crisis: New Trends in Prevention and Treatment.” (more…)
The Asbestos Disease Awareness Organization (ADAO) will present its 9th Annual ADAO International Asbestos Awareness Conference March 22-24, 2013, in Washington, D.C. The conference theme is “The Asbestos Crisis: New Trends in Prevention and Treatment.” (more…)
The Asbestos Disease Awareness Foundation has set out three New Year’s Resolutions to help it succeed in its mission of eliminating mesothelioma and other asbestos-related diseases. And you can help! (more…)
The American Association for Cancer Research (AACR) has selected Charles L. Sawyers, M.D., as its 2012-2013 President-Elect. Sawyers is chair of the Human Oncology and Pathogenesis Program at Memorial Sloan-Kettering Cancer Center (MSKCC), one of the leading medical facilities in the United States treating mesothelioma, a deadly cancer linked to asbestos exposure. Founded in 1907, the American Association for Cancer Research (AACR) is the world’s first and largest professional organization dedicated to advancing cancer research and its mission to prevent and cure cancer. (more…)
A young lady in Lake Stevens, Washington, wrote a touching essay about her grandfather, who passed away from mesothelioma in May 2009. Roberta Pierce said she is dedicating her participation in Relay for Life to him. His death is still with her, she writes. “I still have the scar on my heart. It’s puckered and pink, and is still sore.” (more…)
Linda Reinstein, co-founder of the Asbestos Disease Awareness Organization (ADAO) recently had the opportunity to participate on a panel discussion as part of an Occupational Safety & Health Administration (OSHA) public meeting. The event, held March 4 and called “OSHA Listens” was designed to solicit comments and suggestions from OSHA stakeholders on key issues facing the agency. As a representative of ADAO, Ms. Reinstein was able to address OSHA leaders about the urgency and importance of a complete ban on asbestos. The meeting was held in Washington, D.C.
The program was designed to help OSHA learn about key areas that will enhance and encourage the efforts of employers, workers and unions to identify and address workplace hazards. The agency asked for feedback about emerging unaddressed health and safety issues, how to improve efforts to engage stakeholder in program and initiatives, and for help in identifying priorities.
Ms. Reinstein, who lost her husband Alan to mesothelioma in 2004 as a result of his exposure to asbestos in the workplace, was joined on the panel by others who had lost loved ones to workplace hazards. Overseeing the panel discussion was David Michaels, Assistant Secretary, OSHA; and Deborah Berkowitz, Chief of Staff, OSHA.
“ADAO urges OSHA to move from helping to control to preventing asbestos exposure, and we urge you to help disseminate other government agencies’ information … to increase awareness and support for best practices and encourage compliance,” Reinstein told the panel. She pointed out that OSHA’s own web site estimates 1.3 million employees in construction and general labor have faced “significant asbestos exposure.”
Reinstein also took the opportunity to ask OSHA’s leaders to support pending legislation that calls for a complete ban of asbestos in the U.S.
“Clearly, one life lost to asbestos disease is tragic, but hundreds of thousands of lives lost is unconscionable,” she said. “OSHA has the opportunity – and the responsibility – to protect Americans from these preventable diseases. We count on you to push this forward, and we would encourage and ask that Secretary (of Labor Hilda L.) Solis support asbestos ban legislation to prevent asbestos-caused diseases to protect workers and their families on behalf of the tens of thousands who have lost their life.”
Transcripts of the meeting are available on the OSHA web site.
A web cast of the meeting, including Panel 1, which features Ms. Reinstein, also is available by visiting OSHA online.
The Mesothelioma Applied Research Foundation (Meso Foundation) announced registration is now open for the 2010 International Symposium on Malignant Mesothelioma. The event is set for June 10-12 in Washington, D.C. The annual event includes science presentations from leading mesothelioma experts, breakout sessions for patients, families/caregivers and bereaved, and many community and social activities.
A special part of the Symposium activities is Advocacy Day, during which meso patients and their families travel to Capitol Hill to meet with their Senators and Representatives to ask for increased funding for mesothelioma research and treatment, and for the complete ban of asbestos in the United States.
I had the pleasure of attending this event last year and it is truly an amazing experience. There are touching tributes to those who have lost the fight against mesothelioma, and inspiring stories from those who are winning this battle. You can also gain so much knowledge from the many physicians and researchers who present programs. Many of them are open and available to talk with attendees throughout the conference as well.
You can find more information, including a video and archives of last year’s Symposium presentations, at www.curemeso.org/symposium. You can also view the agenda and register at the web site. Or, call the Meso Foundation toll free at 877-363-6376.
There are tons of new educational, outreach and awareness materials now available from the Mesothelioma Applied Research Foundation. If you do not already subscribe, the latest issue of the Foundation’s “Breath of Hope” newsletter is available. The latest issue provides a recap of activities during the International Symposium on Malignant Mesothelioma, which was held in Washington, D.C., in June. The newsletter includes photos from the event and a wealth of information about research and advocacy, as well as personal stories from mesothelioma patients and their families and caregivers.
This issue is available to download online. If you are having trouble downloading the newsletter, or just want an original hard copy, please let me know. I have some extra copies of the newsletter graciously provided to me by the Meso Foundation that I would be happy to send to you. You can also subscribe by visiting the Meso Foundation online at www.curemeso.org. There also is an archive of past newsletters on the site.
Another exciting resource available at the Meso Foundation web site is a video library of presentations from the Symposium. There were so many great speakers, and this is a truly valuable resource for excellent educational information. The video library also provides access to the slides used by conference speakers. There really is a fantastic amount of information here on topics ranging from Advocacy & Advancing the Mission, to Integrative Medicine, Nutrition, Cancer and the Immune System, Peritoneal Mesothelioma, Pleural Mesothelioma, Clinical Trials and much more.
While on the Meso Foundation web site, please join their online Mesothelioma Community, which will allow you to exchange information with others through a Bulletin Board, as well as read a number of blogs touching on a wide variety of topics. You can also subscribe to an e-newsletter that will keep you informed about all the great work the Meso Foundation is accomplishing in its mission to find a cure for mesothelioma.
If you have any questions or need assistance, you may call the Meso Foundation at (805) 456-7272 or call them toll-free at 877-END-MESO.
It was Cheryl Cotton’s third time attending the Mesothelioma Applied Research Foundation’s annual International Symposium on Malignant Mesothelioma when I met her this past June. We were both seated in the hotel lobby, waiting for a bus to take us to Capitol Hill, where we would ask our legislators to support a complete ban of asbestos and for funding for mesothelioma research.
I think it was Cheryl who introduced herself first, and I was delighted to hear she was from my home state, Alabama, about two and a half hours north of Montgomery, in Anniston. When I told her I was from Montgomery, she was ecstatic to finally find someone with a meso connection in her home state.
Cheryl lost her husband, Virgil, to mesothelioma on May 31, 2005, just two days after their 40th wedding anniversary. She began attending the Meso Foundation conference almost immediately, urgently needing to connect with others who might understand what she was going through, and to make sense of a disease that took her best friend and love of her life before either of them fully realized what was happening.
Virgil first began to notice something was wrong in late March 2004, when he had a severe pain in his side. His hobby was restoring vintage automobiles, and he had been working on a friend’s car, so he thought he had possibly just bruised a muscle while working. But shortly after that he developed a terrible cough.
“It was a whole-body cough,” Cheryl recalls. “Like from head to toe.”
Virgil went to see his doctor, who thought the cough might be related to a drug he was taking following a heart catheterization, which he’d had earlier that year.
“The doctor said it would take 60 days or so to get the drug out of his system, so basically for two months we did nothing,” Cheryl says. “The pain in his side persisted, and the cough got worse. Right up until this time, after his heart problems, he had been dedicated to cardiovascular exercise and eating right. He was probably in the best shape he’d been in for years. He would actually get onto to me about exercising more and eating right,” she recalls with a laugh before turning sober again. “So this was just odd. He kept feeling sicker and sicker.”
He went back to the doctor, thinking maybe there was something wrong with his heart. Tests showed his heart was fine, and doctors sent him home and told him to just continue to exercise and eat right.
But Virgil began having trouble breathing. It was September by now. He visited the doctor again, and was referred to a pulmonary specialist for a thoracentesis. They found fluid in his lungs, but tests came back negative for cancer or any type of infection. But the fluid came back almost immediately.
Cheryl was getting really worried.
“He was used to being active, but now he could hardly get around. He had no energy,” she remembers. “We had requested referrals to see some doctors in Birmingham, because he was dying in front of me. I knew there was something more going on, and I couldn’t understand why nobody could tell us. We had two more thoracenteses and still no diagnosis. The local doctors said they didn’t know what was wrong with him.”
At this point, Cheryl decided to call Birmingham, and talked to a nurse at UAB Medical Center. She got a referral for a pulmonary specialist, and made an appointment for Virgil the following week. But when they got to see the doctor, he said Virgil actually should see a thoracic surgeon, and gave them another referral. They gathered all Virgil’s test results and visited the thoracic surgeon on December 14. An initial theory was that Virgil might have a collapsed lung and scar tissue.
“Virgil had really gone downhill,” Cheryl said. “He was aging. Things had fallen apart in nine months, since the first symptoms.”
Doctors decided to do a thoractomy, but because it was Christmastime, they decided to wait until January, telling Virgil and Cheryl to go home and enjoy the holidays with their family. He finally had the surgery Jan. 4, and they first heard the word mesothelioma. But the diagnosis still wasn’t definite until about 10 days later.
“At that point it was stage 2+ or 3-. It was already advanced. We were referred to a doctor for chemotherapy, but still nobody was really telling us much about what this diagnosis meant. We had no idea.”
Virgil underwent a series of chemotherapy treatments, and then on April 20 began receiving radiation at a cancer center in Birmingham.
“By then, his breathing had deteriorated and they’d put him on oxygen,” Cheryl said. “He’d really not been able to lie flat since September. He had to prop up in a recliner or on a pallet on the floor.”
On May 19, a Thursday morning, Virgil woke Cheryl and told her something was wrong and that he felt he needed to go to the hospital. They went to UAB. On May 21, the doctor came in and told them Virgil was not improving, and that he didn’t have long to live. She estimated two and half to three months, and advised them to get their affairs in order.
“This was the first time anyone really talked to us about dying. Everyone was telling us he had time, that there was all this time.”
They called in Hospice care, and their daughter, Pam, came to visit, bringing their grandson and making a video of Virgil and the boy. On May 30, Virgil began doing worse, and passed away the next day. This was just nine days after they’d first been told that Virgil’s condition was terminal, and about 15 months since his first symptoms.
Cheryl was in shock. “He was 60 years old and had been in prime health,” she says. “When he died, he looked like he was 90. I didn’t even realize how bad he looked because I guess I saw him every day. Months later, I watched the video Pam had made just before he died, and then I really saw it.”
Virgil’s illness had been such a whirlwind; Cheryl wasn’t quite sure what to do after his death. She still couldn’t quite believe it had even happened. She was angry, that Virgil went so long with no diagnosis and no treatment. She felt guilty, like she ought to have somehow known more, or done more. And she felt alone.
Some time after Virgil was diagnosed with mesothelioma, Cheryl found the Mesothelioma Applied Research Foundation, a non-profit organization dedicated to the elimination of mesothelioma through outreach, education and funding research efforts to find a cure. She also connected with Sue Vento, the widow of Sen. Bruce Vento of Minnesota, after whom the pending “Bruce Vento Ban Asbestos and Prevent Mesothelioma” legislation before the U.S. Congress was named.
“She emailed me and I think called me, too,” Cheryl says. “She sent me a book on meso as well. She was the calm in the middle of my storm, and has kept in touch with me during this time via emails.”
Following Virgil’s death, Cheryl decided to attend the Meso Foundation’s annual International Symposium on Malignant Mesothelioma, and packed her bags for the trip to Washington, D.C. Many of her friends couldn’t understand it, but she says it was something she had to do.
“I somehow found MARF and the main reason I went to the conference that first year was to have someone to share this pain, and try to come to some conclusions,” she said. “You feel like you didn’t do something you should have. We had never heard of the word until they told us the diagnosis.
“I really felt like … when you lose your husband, who had been my friend, before he was my sweetheart – we’d known each other since we were 12. I felt if there was some way I could reach out to someone else it would help me as much as maybe I could help them. I felt there was that need in my heart, to find out as much as I could about the disease,” Cheryl says. “It was wonderful to know that people were surviving. But it makes me angry that Virgil didn’t have a chance.”
She had a chance to meet her “rock,” Sue Vento, at that first conference as well. Since that time, Cheryl has attended the Symposium for three years in a row, where she is active, joining others in visiting Capitol Hill to ask Congress to ban asbestos, and to fund mesothelioma research. She is also active in her community, talking to people about the dangers of asbestos exposure and about mesothelioma. She takes brochures about mesothelioma to doctors’ offices, hoping to increase knowledge among the medical community, hoping that someone else may be diagnosed early enough for treatment.
“Now I have contact with more people who are battling mesothelioma, and I learn that most people also have never heard of it. At the time, you just have to hang in there, and you can fall apart later. So I try to connect and just try to help someone, to let them know that someone is there who understands what they are going through. And it helps me too,” she says.
“I share my story every chance I get. I wear an awareness pin. People need to know asbestos is out there and it’s killing people.”
Outreach is hard. Every time she shares Virgil’s story, the pain is fresh again. But Cheryl is determined, and she’s willing.
“Mesothelioma patients and their families are victims,” Cheryl says. “They are victims of asbestos. And all of this COULD and SHOULD have been avoided!”
A recent study published in the September 2009 issue of the American Journal of Industrial Medicine reports workers at four U.S. Department of Energy (DOE) facilities have elevated risks for developing cancer, and former construction workers at the Hanford nuclear reservation in Washington state are 11 times more likely to develop mesothelioma, in particular.
The study, Mortality of Older Construction and Craft Workers Employed at Department of Energy (DOE) Sites, was funded by the DOE and involved a medical screening program that began in 1996 and followed older construction workers at four DOE nuclear weapons complex sites. Sites in the study were Savannah River Site (SRS), South Carolina; Hanford near Richland, Wash.; and facilities at Oak Ridge, Tenn., and Amchitka, Alaska.
The study indicated Hanford workers were 11 times more likely to develop mesothelioma, and three times more likely to develop multiple myeloma, a cancer found in white blood cells. Additionally, Hanford workers died of asbestosis, a severe scarring of the lungs resulting from asbestos inhalation, at rates 30 times higher than the general population. The study also found higher rates of deaths from cancers of the trachea, bronchus and lungs among Hanford workers.
According to the report, significantly excess mortality was observed for all cancers, lung cancer, mesothelioma and asbestosis at all four sites studied. Additionally, non-Hodgkin’s lymphoma was in excess at Oak Ridge and multiple myeloma was in excess at Hanford. Chronic obstructive pulmonary disease (COPD) was significantly elevated among workers at the Savannah River Site.
Workers participating in the study, called the Building Trades National Medical Screening Program, were followed to determine their vital status and mortality experience through Dec. 31, 2004. There were 8,976 workers included in the initial screening program, all of whom had participated in the building trades at the sites. Their data was gathered between 1998 and 2004, and compared to the National Death Index.
Approximately 31 percent of the people in the study – or close to 3,000 workers – had done construction work at the Hanford facility. Since the beginning of the study, 266 Hanson workers had passed away, and 94 of those deaths were attributed to cancer. That number reflects 14 more cancer deaths than would be expected in the general U.S. population.
According to its web site, the Building Trades National Medical Screening Program was developed to identify health problems caused by hazardous substances that workers may have been exposed to while working on a Department of Energy site. It is led by the CPWR, The Center for Construction Research and Training, in Washington, D.C. The consortium includes the University of Cincinnatie Medical Center (Ohio), Duke University Medical Center (N.C.), and Zenith Administrators, Inc., Seattle, Wash. The program is sponsored by the Building and Construction Trades Department, AFL-CIO and endorsed by various state and local Building and Construction Trades Councils.
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