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.

SOURCE: myMeso › ADAO provides a voice for workers at ‘OSHA Listens’ hearing

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.

SOURCE: myMeso › Registration now open for Meso Symposium

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.

SOURCE: myMeso › Awareness, educational materials available from Meso Foundation

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!”

SOURCE: myMeso › Victims of asbestos — Virgil and Cheryl’s story

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.

Additional sources:

Seattle PI
Aiken Standard
The News Tribune

SOURCE: myMeso › DOE construction workers report high incidence of mesothelioma

I was also contacted by a woman in Texas, who hoped that I could put her in touch with another woman who had lost her husband to mesothelioma. Her anniversary was approaching, and she needed to reach out to someone who would understand. Of course Cheryl willingly contacted her to lend an ear.

Then, on Friday I posted a story about a photographer in Australia, Chris Ireland, who has created an exhibition of stunning images of mesothelioma widows, called Breathe. The fourteen portraits capture the sadness and strength of these suffering ladies, and also hope to capture a bit of the men they loved. Ireland spent two years on the project, becoming closely acquainted with each of the ladies he photographed. I contacted Chris and was delighted to learn that he does have plans to bring the exhibit to the UK and to the U.S. in the coming months, and I hope that myMeso can be a part of that. I will keep you posted.

Next, I came across a story in the Morgan County Herald, a community newspaper based in McConnelsville, Ohio, which featured the story of Karen Huffman, who recently donated $3,000 to her area Kiwanis-Jaycees for the construction of a new walking trail at the community park in Malta in honor of her late husband, Danny, who passed away from mesothelioma on July 31, 2006, just four months after his diagnosis.

According to the report in the Herald, Mrs. Huffman says her husband most enjoyed his daily walks, not just for exercise, but as his quiet time to commune with God. She said he walked two or three miles each day except Sunday. It was during one of these walks that he became breathless, and unable to make it back to his home. At that point, she says, he couldn’t deny something was terribly wrong.

“Danny would have been the first walker on that trail,” the Herald quotes Mrs. Huffman as saying about the new park.

I wonder, as I read this latest news, why it seems there are so many stories of this kind around me now. Have they always been there, but my work with mesothelioma has made them more visible to me? I hope that it means that there is more awareness in the United States, and around the world, of mesothelioma, and the dangers of the asbestos that causes it.

I hope, somehow, that this site can make connections or provide the news that will bring some sort of ease, or at least a sense of community, of not being alone. It is a terrible sisterhood these women share. But perhaps just knowing there is someone else who understands will bring a small measure of comfort.

SOURCE: myMeso › Meso widow donates $3000 for walking trail in memory of her husband

Here at myMeso, we have had great support for both Mesothelioma Awareness Day and Asbestos Awareness Day (April 1) from the City of Montgomery in the past. This year, we are hoping to expand our efforts, and share this important message with even more folks throughout our community and across the state. I’ll keep you posted as our plans develop. If you’d like any help in your area, please let me know, and I’ll be glad to lend a hand, or certainly contact the good folks at the Meso Foundation.

In addition to Meso Awareness Day, there are a few other upcoming mesothelioma and asbestos awareness events – go ahead and mark your calendar!

• The Asbestos Disease Awareness Organization (ADAO) has announced its Sixth Annual International Asbestos Awareness Day (AAD) Conference will be held in Chicago, Ill., April 9-11, 2010. Registration starts January 1, 2010. The theme is “Science and Technology Proves Asbestos is a Carcinogen.” This great conference features tons of expert speakers, as well as a heartfelt Remembrance Brunch to honor those who lost their lives to asbestos disease. Visit the ADAO web site for more information, and make plans now to attend.
• The Mesothelioma Applied Research Foundation (Meso Foundation) announced the 2010 International Symposium on Malignant Mesothelioma will again be held in Washington, D.C., and the event will return to the Omni Shoreham Hotel, which was a wonderful host for the event this year. Dates are June 10-12, 2010.

I will provide more information about both of these events as details are announced, but it’s never too late to make your plans. These events provide a wonderful opportunity to learn more about the dangers of asbestos, and the progress being made in research and treatment of asbestos-related diseases like mesothelioma. They also are a wonderful way to network and make connections with other people who are fighting the battle to prevent and cure mesothelioma.

SOURCE: myMeso › Mark your calendar for mesothelioma, asbestos awareness events

Peritoneal mesothelioma affects the lining of the abdomen, and makes up about 10-15 percent of all mesothelioma diagnoses. The more common form of mesothelioma is pleural, which affects the lining of the chest and lungs. All mesothelioma is linked to asbestos exposure.

The current “best practice” for the treatment of mesothelioma is a multi-modality approach, which is a combination of surgery and chemotherapy, along with immunotherapy.

“It’s a sequence of treatments that make sense,” Dr. Chabot explained.

However, Dr. Sugarbaker pointed out, only a small fraction of mesothelioma patients receive multimodality treatment.

“So many more things could be done to manage the treatment of this rare disorder,” Dr. Sugarbaker said. “We should have accumulated many thousands of data points on people with peritoneal mesothelioma. Unfortunately, a majority of patients in the U.S. do not get to a treatment center.”

There are still only a handful of treatment centers that specialize in mesothelioma, and even then there are distinctions in the treatment of peritoneal or pleural mesothelioma that narrows the field even further. Also, there are not a large number of physicians currently treating mesothelioma, and no established surgical training programs specifically for this field to develop more doctors experienced in mesothelioma treatment.

Awareness also is still an issue. Many patients are diagnosed too late for effective treatment.

Even if awareness is high and a patient is diagnosed early enough to be a viable candidate for successful mesothelioma treatment, the logistics of receiving treatment can be difficult. Most of the centers for mesothelioma treatment are located on the East Coast. There is one on the West Coast, but almost no options in the Midwest or other areas of the country. Treatment is usually extended over many months, making it necessary for patients to relocate to be near a treatment center if they are not lucky enough to live nearby.

“People often move and rent temporary housing. People live in trailers,” Dr. Chabot said. “More advocacy is needed to provide patient and family support for treatment. The travel issues for people who need treatment are huge.”

The Mesothelioma Applied Research Foundation, which sponsors the annual Meso Symposium, is laying the groundwork to facilitate discussions and establish a collaborative strategy, simply by bringing together the experts in this field. There is an emphasis now on forming a consortium to establish a new standard of care, and to try to combine the knowledge of the existing research and treatment centers, and to expand access to that research and treatment.

But, the experts acknowledge, there is still much to do.

SOURCE: myMeso › Access to mesothelioma treatment limited, difficult

This annual symposium is “for everybody” affected by mesothelioma. This includes patients, caregivers and family members, and those who have lost a loved one to mesothelioma, as well as advocates and scientific and medical experts. The event is designed to provide education about new research and treatment, to assist meso patients and their families and loved ones with coping skills and a network of support, and provide advocates with the tools to help make an impact in the effort to raise awareness about mesothelioma and the dangers of asbestos exposure, and to raise funds for research.

“I don’t think any community knows more about holding onto hope in the midst of difficult circumstances than mesothelioma patients and their families, ” said MARF executive director Chris Hahn. “But there is still a perception of mesothelioma as an orphan disease. It is overlooked, by the government, by the average person, despite the huge presence of asbestos in our society,” he said.

Mesothelioma is a deadly cancer that affects the lining of the chest wall or, more rarely, the abdomen, and, in very rare instances, the heart. It is caused by exposure to asbestos, and may have a latency period of up to 40 years or more from the time of exposure until symptoms manifest. It is difficult to diagnose, and often is misdiagnosed until too late for effective treatment. Even if diagnosed early, treatment is often difficult, and there is currently no known cure.

The Mesothelioma Applied Reserach Foundation is the largest independent program for mesothelioma reserach and support in the world. It operates a competitive grant program that awards up to 10 grants, or $10 million, each year to research projects most likely to lead to better treatment.

The Foundation is a non-profit organization whose main mission is dedicated to “eradicating the life-ending and vicious effects of mesothelioma.”

MARF needs funding. This is the only organization dedicated to the research and treatment of mesothelioma, but it is facing the same struggles that many other charitable foundations are facing in this tough economy – donations are down, funding is stretched thin. The foundation received 59 grant applications in 2008 – programs that WANT to explore and investigate mesothelioma in search of earlier diagnosis, better treatment methods and, ultimately a cure. But the Foundation was only able to fund five new programs in 2008.

It is estimated that 3,300 new cases of mesothelioma will be diagnosed each year.

Mesothelioma, once considered an industrial disease affecting primarily older men, is being diagnosed in younger and younger people. In 2008, a 3-year-old girl was diagnosed with mesothelioma. Mesothelioma is everybody’s problem. We cannot afford NOT to support mesothelioma research.

For more information about the Mesothelioma Applied Research Foundation and how to make a donation, visit them online.

The Foundation also needs volunteers. There are a number of ways you can help, from advocacy efforts to planning a fund-raising event, to simply helping put out the word about mesothelioma and the effects of asbestos exposure. You can find that information on their web site, too.

This was my first experience at the Symposium, and it was emotionally and intellectually exhausting, and inspiring, and motivating. I met some amazing people who, despite being personally devestated by mesothelioma, are determined to keep fighting. I’m amazed by this great group of folks.

I plan to add many more stories from information presented at the conference, and from the people I met there, in the next several days, so please check back! It’s too much to tell in one post!

SOURCE: myMeso › Mesothelioma community rallies to raise awareness, find a cure

More updates to come – the Symposium continues through Saturday afternoon.

SOURCE: myMeso › MyMeso goes to Washington

In a news release from his office on Capitol Hill, Kucinich says, “Asbestos is a highly toxic material that has no place in construction projects here or anywhere else, especially when viable alternatives are available.” In the past, asbestos was used for fire protection, but there are other modern materials available now that preclude the necessity for using asbestos. Still, it is included in many construction materials today, including roofing shingles.

The statement was spurred by a letter of inquiry that Kucinich spearheaded, to urge The World Bank to finalize a construction guidance that would drastically reduce the use of asbestos in new construction projects. The report was commissioned in 2006, and completed in 2008, but its release has been stalled. Kucinich, joined by four other members of Congress, urged World Bank to release the guidance immediately.

The World Bank is not a bank in the usual sense, but  is a source of financial and technical assistance to developing countries worldwide. It is made up of two development institutions owned by 185 member countries. The World Bank carries out projects and provides a wide variety of analytical and advisory services to help meet the development needs of individual countries and the international community.

Regarding asbestos, the 2009 Guidance says, “Health hazards from breathing asbestos dust include asbestosis, a lung scarring disease, and various forms of cancer … Mesothelioma, a signal tumor for asbestos exposure, occurs among workers’ family members from dust on the workers’ clothes and among neighbors of asbestos air pollution point sources. Some experimental animal studies show that high inhalation exposures to all forms of asbestos for only hours can cause cancer.”

Kucinich says, “Global asbestos use is on the rise at the very time it should be eliminated.”

Read the full text of the 17-page Guidance on Asbestos.

SOURCE: myMeso › Kucinich works for asbestos eradication

During the Tribute Ceremony, MARF will create a collage of photos of these loved ones who have passed away. I would be more than honored to carry your photo to Washington to add to this Tribute. You may send your photo electronically, by email, and I will make color prints to add to the collage. Please let me know if you would be interested in this. You can email mymeso@gmail.com or email me directly at wendi.lewis@beasleyallen.com.

On Thursday, I also will have the opportunity to visit Capitol Hill to ask our congressional representatives to provide federal funding for mesothelioma research and treatment, and for the ban of asbestos. Please take a moment to sign the petition for these endeavors – there is a link on our home page.

I look forward to attending the Symposium next week, and will be blogging from the conference, which will provide a wealth of information about the latest progress in mesothelioma research and treatment. The conference begins on Thursday, June 25, with the visits to Capitol Hill, and continues through Saturday featuring distinguished physicians, researchers and advocates. I’m sure there will be a lot of valuable information to share.

God bless you all!

SOURCE: myMeso › May I remember your loved one at the Meso Symposium Tribute Ceremony?

Shortly after her return, abdominal pain sent her back to the hospital. She was good enough to email me to let me know she had suffered from a condition called illeus, which is when the intestines become paralyzed. She stayed in the hospital in Texas for a few days until finally coming home again on May 13. She said she’s focusing on getting stronger and gaining weight, but is frustrated by the  setback after all her hard work to recover from her surgery.

You can check in on Shanna’s progress by reading her journal on the CaringBridge web site and email her some encouraging words at goddesslorraine@aol.com. I know she’d really appreciate hearing from some folks in the meso community!

There was a fundraiser in her honor last weekend, and there’s an ongoing effort in Texas called “Cooking for the Cure” to help raise money for Shanna’s treatments.  Cheri Travis, who is one of the organizers of Cooking for the Cure, reports Shanna is scheduled for another surgery in August, so fund raising efforts continue.

Cooking for a Cure was started by Cheri and two other friends who like cooking, and wanted to use their interests and talents in the kitchen to raise money for Shanna. They gather at one person’s house and prepare food, which they distribute in exchange for donations.

“It’s really spread by word of mouth of people who buy our food,” Cheri explained in an email to me. “Plus, we have fun doing it and helping raise funds for our friend.”

The group is based near Victoria, Texas, so if you live in that area, check out this unique project!

Cheri said there also is another fund raising benefit in Shanna’s honor planned for September 18 in Victoria. I’ll let you know the details when I have them.

In the meantime, if you live near Victoria and would like to purchase food from Cooking for the Cure, you can email Cheri at cetfrog@gmail.com.

Or, if you would still like to make a donation to help with Shanna’s treatment, you can send it to:

Cooking for the Cure
17114 Eagle Hollow Drive
San Antonio, TX 78248

SOURCE: myMeso › Cooking for the Cure benefits mesothelioma patient

Shanna Kurtz was diagnosed in 1999, at age 20, after suffering from several years of unexplained abdominal pain. Doctors who originally suspected a fibrosis tumor discovered a grapefruit-sized tumor in her abdomen, which was diagnosed as peritoneal mesothelioma.

Shanna’s journal on CaringBridge.org documents her experiences through the last several years as she has fought to keep this cancer at bay. It is heartbreaking to read about someone so young who has to face this experience. In one journal entry from October 2008, she reflects on how it feels when people tell her how strong she is, when she doesn’t have any other choice. She states frankly that she is jealous of people who have the option to choose what they will do with their lives, and reflects on so many doors that are closed to her.

Despite the inevitable depression, Shanna is remarkable. Upon her diagnosis told her only about 20 percent of patients survive beyond a couple of years. Determined to be in that 20 percent, she is beating the odds.

Most recently, Shanna’s journal chronicles a surgery on March 26 in Washington, DC, at the Center for Surgical Oncology at the Washington Cancer Institute, Washington Hospital Center.  Dr. Paul Sugarbaker removed a number of tumors, including one that had covered part of her liver. Following the surgery, the doctor filled her abdomen with chemotherapy medication in a process called postoperative intraperitoneal chemotherapy. The solution comes into contact with areas the tumor has touched, in an effort to erradicate those cells and prevent recurrance.

Shanna was in the hospital for a little over a month, finally returning home to Cuero, Texas, on May 7.

This weekend, there will be a benefit in her honor, to help offset the medical expenses of the surgery. The event will feature a bike ride and barbecue. The bike ride will leave from Grace Lutheran Church in Victoria, Texas, on Saturday, May 16, at 2 p.m., and will be followed by an evening of dancing, an auction, food and music, which will start around 4 p.m. at Lindenau Dance Hall, which is about 33 miles from Victoria. Cost to participate is $30.

If you are in the area, please attend this event!

In addition to the weekend event, there is an ongoing project called “Cooking for the Cure,” in which three friends prepare food in exchange for a donation to help Shanna. In its first month, the project raised more than $1,100.

For more information about Cooking for the Cure or the Shanna Kurtz Benefit Barbecue, or to make a donation to help Shanna, contact Cheri Travis at cetfrog@gmail.com.

SOURCE: myMeso › Weekend benefit for Texas girl fighting peritoneal mesothelioma

Asbestos exposure causes serious disease, including asbestosis, a severe scarring of the lungs that worsens with time and impairs the ability of its victims to breathe, and mesothelioma, a deadly cancer that affects the lining of the lungs and, more rarely, the stomach and heart.

According to the report in The Missoulian, statistics compiled by the Center for Asbestos Related Disease (CARD), located in Libby, indicate that to date 227 community members have died from asbestos disease, and there are more than 1,800 active cases resulting from exposure to the deadly fiber. The newspaper notes that “the study also attributes scores of deaths to non-occupational asbestos exposures, and finds that 77 people who never worked at Grace’s mine in Libby have died of asbestos disease since 1998.”

David Uhlmann, who is former chief of the Justice Department’s environmental crimes section, who was instrumental in developing much of the early indictment against Grace, said the Government’s case against Grace was severely limited by the court, which did not allow much of the evidence to be presented to the jury. This included some of the most incriminating internal memos, he said.

The Post quotes Uhlmann as saying, “The verdict is a fair reflection of the evidence that jurors were allowed to hear. But the question that hangs over this case is what would have happened if the government were allowed to present all of the evidence that it had amassed in this multi-year investigation.”

According to a report in The Washington Post, in a court filing the government acknowledged it “has committed discovery violations in this case,” which led to many rulings excluding its evidence and weakening its case against Grace.

The Missoulian reported the reaction of two Libby residents familiar to our readers – Gayla Benefield, who was perhaps the first to raise the outcry about the dangers of deadly asbestos in the town, said the company has “gotten away with murder.” And the paper quotes our friend Mike Crill, who worked in the asbestos mine and has lost family members to asbestos related disease and suffers himself from asbestos disease.

The Missoulian says Mike cried upon hearing the verdict. The paper quotes him: “What did they die for? What am I dying for?” Crill sobbed. “They are guilty of killing us.”

SOURCE: myMeso › Jury aquits W.R. Grace & Co. of criminal charges

The timing of this event was perfect, as it coincided with Asbestos Awareness Week, which is April 1-7. The week has been recognized nationally by U.S. Senate Resolution, and also locally by Montgomery Mayor Todd Strange. Thank you, Mayor Strange, for supporting Asbestos Awareness in the Capital City! The Mayor signed a proclamation on April 1 in recognition of the special week.

At the crawfish boil event, which was held in Downtown Montgomery at Riverwalk Park, we were able to provide information about asbestos exposure and safety, as well as information about mesothelioma. I talked to two gentlemen who have been exposed to asbestos, both in their jobs. We also visited with a woman who recently lost her husband to lung cancer, as a result of smoking and also asbestos inhalation in his work.

Many people were surprised to learn that asbestos is still not completely banned in the United States. We provided a petition they can sign, which I will take to Washington, D.C., in June when I attend the Mesothelioma Applied Research Foundation’s International Mesothelioma Symposium. During that event, I will have the opportunity to meet with my Congressional delegates to lobby for an asbestos ban.

We’re adding an online petition to this site, too, which should be up in the next couple of days. I’ll let you know when it’s active, and I would love to have everyone sign!

SOURCE: myMeso › Raising awareness of mesothelioma, asbestos

The Symposium highlights the latest advances in research and treatment for patients and caregivers, offers psychosocial support to them as well as those who have lost someone to the disease, and provides significant advocacy and volunteer opportunities for those who are intent on eradicating mesothelioma.

Activities usually include educational forums on a number of medical topics related to mesothelioma, as well as instruction on outreach topics including volunteerism, fundraising, peer support and advocacy, to help those who want to make a difference learn how to be most effective.

While specifics on this year’s event have not been announced, last year’s event also included opportunities for attendees to lobby their congressional delegation on behalf of asbestos and mesothelioma awareness and funding. There also was a gala dinner to honor those living with meso, and recognize outstanding volunteers and advocates for their hard work.

As in past years, scholarships for Symposium registration fees, as well as for transportation and accommodations, are available for patients, family members and caregivers who would like to attend.

For more information, visit www.CureMeso.org.

SOURCE: myMeso › Save the date for Meso Symposium 2009

According to recent report in the Seattle Post-Intelligencer, there were 20 experts appointed to the SAB’s asbestos panel, charged with evaluating the validity of the EPA’s plan to change how the toxicity of the six types of asbestos regulated by the government differ in danger. Its findings would be submitted to the White House Office of Management and Budget (OMB).

According to the PI report, scientific advisors say the EPA used the asbestos panel to submit new studies that contradict longstanding research into the dangers of asbestos. The new studies say chrysolite, in particular, the most common type of asbestos, isn’t dangerous and doesn’t cause mesothelioma.

PI quotes Dr. David Egilman, an occupational medicine specialist, who testified at the public meeting, as saying the new study was financed by mining and other asbestos-related industries, and said the studies have no scientific credibility.

Another vocal spokesperson at the hearing was Sen. Patty Murray, who sponsored S. 742, the Ban Asbestos in America Act of 2007, which passed the Senate on Oct. 4, 2007. Currently, it is the companion bill to H.R. 3339, the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act, sponsored by Rep. Betty McCollum, which currently is in committee in the House of Representatives.

Sen. Murray has long been an advocate for a total asbestos ban, calling for better worker protection. The PI quotes Sen. Murray as telling the committee, “I’d like the political appointees at the EPA to look into the eyes of a mesothelioma patient and say that asbestos isn’t dangerous. It appears that this administration is once again putting politics before public health.” Murray is currently chairwoman of the Senate Employment and Workplace Safety Subcommittee.

The EPA asserts the new system is needed to improve how asbestos-contaminated Superfund sites are evaluated. The organization can move forward with its proposal without approval from the OMB or the SAB, if it so chooses.

SOURCE: myMeso › Why is EPA proposing relaxed asbestos rules?

When her grandfather passed away, 9-year-old Lexi, who lives just outside Allentown, Pennsylvania, channeled her grief into a letter-writing campaign, hoping to raise awareness of mesothelioma. According to an article in The Morning Call, a publication that serves Pennsylvania’s Lehigh Valley, Lexi wrote medical research organizations, political leaders including President George Bush, and even television celebrities like Oprah Winfrey, hoping to spread the word about asbestos danger and mesothelioma.

This year, the Meso Foundation invited Lexi to give the keynote address Friday, June 27, at its International Symposium. The Morning Call quotes Chris Hahn, the foundation’s executive director, as saying, ”We wanted to show the full spectrum of the disease’s effect on families. How inspiring it is that this young gal going into eighth grade has this concern for a much bigger national problem.”

SOURCE: myMeso › Girl honors grandpa at Mesothelioma symposium

According to Rob Grayson, director of marketing for the Meso Foundation, the event actually started as a purely scientific event, geared toward researchers and scientists, with technical presentations. However, at the time, there were no informational or educational events like it, and they found that patients, families and caregivers wanted to attend.

“Initially, these people would come and sit in on these high-level presentations by scientists, with very technical presentations. We saw the interest and our meeting has now evolved into more of a patient meeting, the scientists speak in more layman’s terms, and we’ve added programs to reach out to people who are also interested in the community of support and the activism that takes place,” Grayson said.

The advocacy element is a new piece of the symposium, added last year when the meeting coincided with debate in the Senate on the Ban Asbestos in America Act, S. 742, sponsored by Senator Patty Murray (D-WA).

“The day we lobbied, they took an administrative vote, and it passed in the Senate. So we’re going back to Washington this year,” Grayson said.

Advocacy efforts this year will include a rallying cry to the House of Representatives to move quickly to pass the legislation in the House, which bans asbestos and provides research funding for mesothelioma. Last week, the Foundation issued an action alert in support of The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007 (H.R. 3339), the companion to the Senate bill. The bill includes $10 million for mesothelioma research.

“Normally we’d hold the Symposium in a different city each year, but it’s almost the same timing as last year, with the bill pending, this time in the House, so we’re back to Washington,” Grayson explained.

Those attending the Symposium can register to participate in the advocacy efforts, and the Meso Foundation will arrange for them to meet personally with their congressional delegate, and will provide a training session to help advocates prepare for the meeting.

In addition to lobbying for passage of the House bill, Symposium advocates will request that the Senate’s Defense Appropriations Subcommittee maintain, for the second year, mesothelioma’s eligibility to compete for medical research funding from the Department of Defense. In 2007, the DoD appropriated $50 million and included mesothelioma as a research priority for its Peer Reviewed Medical Research Program, effective in the 2008 budget. The Meso Foundation is working for continuing and increasing funds for mesothelioma research in the 2009 defense appropriations bill.

“There currently is no ban on asbestos, so companies can use it however they see fit. We’ve pretty much stopped mining here, but asbestos is still used in about 3,000 products that you could go out and buy right now. Even if we banned asbestos tomorrow, it probably won’t change the rate of sickness for the next 50 years, due to the latency period of asbestos. That’s why the funding for research is so important,” Grayson says. “Advocacy and the call for a ban on asbestos raises awareness, and raises money for research, which is what we need to deal with the illness itself,” he said.

In addition to advocacy, the Symposium again will feature an educational program, with sessions covering topics including Peritoneal Mesothelioma, Pleural Meso Surgical Options, Emerging Therapies, Optimizing Patient Care, and Scientific Advances in Meso Research. Other educational programs will provide instruction on outreach topics including volunteerism, fundraising, peer support and advocacy, to help those who want to make a difference learn how to be most effective.

A Gala Dinner will honor those people living with meso, and recognize outstanding volunteers and advocates for their hard work and dedication to raising awareness. The dinner will feature a unique guest speaker – Seventh grader Lexi Miletto, the granddaughter of Joseph Miletto, who died in 2005 of peritoneal mesothelioma.

Scholarships for Symposium registration fees, as well as for transportation and accommodations, are still available for patients, family members and caregivers who would like to attend. Contact the Meso Foundation at www.curemeso.org or call 805-563-8400 for details.

The Mesothelioma Foundation was started in 1999, by attorney Roger Worthington. Unfortunately, Grayson says, there was an initial stigma because of his association, with people suspicious the Foundation was attempting to gather clients for his firm, so he removed himself from the Board of Directors and the Foundation was re-established as a non-profit, 501(c)3 organization. Today, with 8 staff members, the organization raises $2.5 million annually and funds more than $1 million in research projects.

“Currently, most of our funding goes to seed money to help researchers who have good ideas for treatment to validate their work, and take it to the NIH to get additional funding for the next step of the research,” Grayson explained. “We hope very soon that we’ll be able to fund clinical trials.”

SOURCE: myMeso › MARF announces Mesothelioma Symposium

Nanotubes are tiny, cylindrical carbon molecules that, according to Wikipedia, exhibit extraordinary strength and unique electrical properties, and are efficient conductors of heat. They are already being used in sporting equipment like bicycle frames and tennis rackets due to their strength, and are thought to be the future of technology. They are used in some electronic components now, and are being researched to build tiny electronics and optics.

Researchers do not believe that materials containing carbon nanotubes are dangerous in and of themselves, in materials and products where they are safely encased, but are concerned about tiny nanotube fibers being released when those products are broken or incinerated. Also, they are concerned about workplace safety for nano factory workers.

The Washington Post reported that “preliminary evidence of cancer risk is strong enough to justify urgent follow-up tests and government guidance for nano factory workers.”

The National Institute for Occupational Safety and Health is conducting nanotoxicology research, and, according to a story in the San Francisco Chronicle, already recommends people working with carbon nanotubes follow NIOSH guidelines for working with engineered nanomaterials. This includes using respirators and special filters to clean the air.

It is estimated that nanotubes will be a $2 billion industry within the next few years, and nanoparticle technology and production even more than that.

The Washington Post points out that there is already significant federal spending in place to support this industry, with the National Nanotechnology Initiative providing about $1.5 billion a year for research. Only 5 percent of that fund is focused on health and safety.

While the carbon nanotube research is preliminary, its findings are significant enough to warrant real concern.

John M. Balbus, health program chief at the Environmental Defense Fund, made a prophetic statement to the Washington Post about the future of nanotechnology as it relates to public health. The paper quotes him as saying, “I think we are really coming to a critical juncture relating to transparency and stewardship. We will see whether various companies are going to be proactive and up front with people, and communicate openly in a way that inspires confidence and not repeat mistakes that other industries made in the past.”

SOURCE: myMeso › Nanotechnology linked to mesothelioma concern

In October 2007, the Senate companion bill, sponsored by Sen. Patty Murray (D-WA), passed. The House bill toughened the legislation, under the direction of the Environment and Hazardous Material Subcommittee of the House’s Energy and Commerce Committee, eliminating an exception for asbestos present at 1 percent or less by weight, making the ban a matter of federal statute rather than EPA regulation, and adding enforcement provisions.

The Meso Foundation reports the critically needed medical research funding provisions from Sen. Murray’s and Congresswoman McCollum’s legislation have not yet been added to the Committee Print.

In a statement released yesterday in support of including the research funding, the Meso Foundation said, “for the sake of all those already exposed, those now sick, and those who will be exposed in the future to asbestos already in place, we call on the Health Subcommittee to follow Sen. Murray and Congresswoman McCollum in recognizing the necessity of a robust asbestos disease research program, and to adopt the research funding provisions included in their legislation.”

Read the full story about this important legislation at Yahoo! News.

Supporters are urged to contact their Representative in Washington, DC, to urge inclusion of the research funding and swift passage of the complete bill once the funding is in place.

In Alabama, House Representatives are Robert Aderholt (4th Congressional District), Jo Bonner (1st), Mike Rogers (3rd), Spencer Bachus (6th), Robert E. “Bud” Cramer (5th) and Terry Everett (2nd). If you are not sure which is your congressional district, to locate contact information for your representative or to locate the representative for your state, visit the United States House of Representatives online, and click on your state for a list of your representatives.

Please contact your Representative NOW to let them know you support this legislation and to ask for their support. Please email me if you’d like any help!

SOURCE: myMeso › Action alert for Ban Asbestos and Prevent Mesothelioma Act

According to a release on MARF’s web site, the Virtual Bank, which was four years in development, is the first mesothelioma research resource of its kind. The NMVB provides mesothelioma tissue samples from a variety of institutions, clinically annotated in a readily accessible database, to researchers in all mesothelioma investigations.

The Meso Foundation is the national organization dedicated to eradicating mesothelioma as a life-ending disease by funding the highest quality and most promising research projects from around the world through our rigorous peer-reviewed process; helping patients connect with national meso experts and obtain the most up-to-date information on treatment options; and advocating in Washington, D.C., for federal mesothelioma research funding to stop this national tragedy.

The Foundation has funded more than $5 million in mesothelioma research projects around the world, to date.

According to the MARF release, the NMVB is a collaborative effort of multiple organizations, including the Center for Disease Control and Prevention and the National Institute for Occupational Safety and Health, which together provided the initial $1 million grant for starting the tissue bank.

The release goes on to describe the NMVB as a bioinformatics system that combines assorted data from mesothelioma-related specimens into a single, annotated engine. The goal of the tissue bank is to expedite the discovery of preventive measures, novel therapeutic interventions and ultimately cures for mesothelioma.

For more information on the National Mesothelioma Virtual Bank, visit www.mesotissue.org.

The Meso Foundation will host its annual symposium to educate patients and families on the latest advances in meso research and treatment this year in Washington, D.C., June 26-28.

SOURCE: myMeso › National Mesothelioma Virtual Bank operational

In the 2008 defense appropriations bill, Congress designated $50 million for the mesothelioma research as part of the Pentagon’s peer-reviewed program.

TheHill.com points out that supporters of the initiative for continued funding in the 2009 bill argue that “at least one third of the people suffering from mesothelioma … have either been in the Navy or worked in Navy shipyards across the country” where they were exposed to asbestos. Much of the exposure in the Navy cases, the report states, happened between World War II and the Vietnam War, when asbestos was used in shipyards and ships. For that reason, supporters push for federal funding for research.

TheHill.com writer Roxana Tiron reports that last month several senators sent a letter to the chairman and ranking member of the Senate Appropriations Defense panel in support of the continued funding. The letter stated, in part, “Funding through the Department of Defense appropriations bill is an important demonstration of our nation’s commitment to addressing the tragedy of mesothelioma and its disproportionate impact on those who serve our country.”

Among the bill’s supporters are Sens. Max Baucus (D-Mont.) and Patty Murray (D-Wash.), who have been leading the charge to ban asbestos and secure more funding for mesothelioma research. The Ban Asbestos bill, introduced by Murray and passed in the Senate last October, includes $10 million per year in funding for cancer research. The companion bill in the House has not yet been passed.

Also among the supporters for the 2009 appropriations funding for meso are Sens. Patrick Leahy (D-Vt.), Dick Durbin (D-Ill.), Barbara Boxer (D-Calif.) and John Ensign (R-Nev.).

The Meso Foundation funds approximately $1 million a year for research worldwide. The organization will hold its annual three-day symposium in Washington, D.C., starting on June 26, expecting more than 100 grassroots supporters to meet with their congressional representatives. For more information about this event, visit MARF online.

SOURCE: myMeso › DoD appropriations bill has meso funding request

ADAO secured a senate resolution declaring April 1 as Asbestos Awareness Day, and April 1-7 as Abestos Awareness Week. You can visit the ADAO online.

Today also is Asbestos Awareness Day in Montgomery, Alabama, as designated by mayoral proclamation, signed by Montgomery Mayor Bobby Bright. The local effort strives to bring the message of asbestos awareness and education to the community and to bring attention to the national effort to ban asbestos.

Asbestos exposure can lead to asbestos-related disease including asbestosis, lung cancer and malignant mesothelioma. Many symptoms of mesothelioma and other asbestos diseases do not appear for 20 or more years, making it difficult to diagnose early. For this reason, the cancer is often diagnosed in late stages, making it too often deadly.

In the U.S. current statistics show 2,000-3,000 people are diagnosed with malignant pleural mesothelioma each year, and 10,000 Americans or more die each year from all asbestos-related disease.

SOURCE: myMeso › Today is Asbestos Awareness Day

Chairman Coady’s story

Leading the charge for the organization is Rear Admiral Phil Coady, U.S. Navy (Ret.), who serves as chairman of the board of directors. A career Navy officer, Coady was diagnosed with non-small cell lung cancer in early 2005. He underwent surgery to remove the affected lobe and went through chemotherapy. In late 2005, the cancer recurred with metasteses to his bones. Chemotherapy has been successful in slowing the advance of the cancer for the past two years, and Coady is fighting for other lung cancer survivors.

Although Coady doesn’t suffer from mesothelioma, he is very much aware of the risks posed by asbestos. His work during his time in the Navy very often put him in contact with the substance, he said, and seven of his friends died from mesothelioma since his retirement.

In addition, for 10 years following his retirement, Coady worked as president of the Navy Mutual Aid Association, a non-profit veterans benefit group and life insurance service, where he saw what he thought was a disproportionate amount of lung cancer deaths.

He notes that shipboard service in the Navy, particularly during the years he served, routinely involved exposure to asbestos, second hand smoke and other possible carcinogens. Veterans also were at risk from exposure to chemicals such as Agent Orange, sulfur mustard gas, and other battlefield combustion products.

“I had heavy exposure to asbestos in the Navy,” he says. “I spent a lot of my time as an engineer on ships. In the 1960s there were no precautions about asbestos that I recall at all. We tore out asbestos with hand tools. A dust mask might have been our most aggressive protection.”

With a family history of pulmonary fibrosis, a chronic scarring of the lungs, Coady always had his asbestos exposure in the back of his mind in relation to his health, and had regular CT scans to check for the disease, which he did eventually develop as a result of his exposure. Then, in 2005, the scans also showed lung cancer.

“Ironically, it was really my concern about asbestos that probably saved my life,” Coady said, crediting his regular screenings with catching his cancer early.

Next: The stigma of lung cancer

SOURCE: myMeso › LCA lobbies for lung cancer funding, awareness

This means that people who contracted asbestos-related diseases through exposure to the clothing or bodies of people who work or worked firsthand with asbestos can now bring suit against those family members’ employer on their own behalf.

The story notes that this new ruling overturns a previous ruling made by a lower court and sets a precedent that may allow hundreds of additional claims.

Read the full story at www.bloggernews.net.

SOURCE: myMeso › Recourse for secondary asbestos exposure

Searches, news alerts, links – they invariably take me to stories written by the British media and posted to UK web sites and publications. The Press Association, the BBC, WebWire – just TODAY they had three stories about asbestos-related disease.

Stories urged workers likely to come in contact with asbestos to use precautions, wear protective clothing including filtered breathing units. Britain is having Mesothelioma Awareness Day Feb. 27.

Where is our news? Where is our information? The only time anyone in America has ever heard of Mesothelioma is when a loved one is shocked by a diagnosis.

Oh, and there is another time people hear about it. On commercials for law firms, which can tend to generate skepticism, scoffing, a sense that someone is trying to gain from someone else’s misfortune. Is that the truth?

The web site Asbestos.com recently talked to a professor of ethics at Washington University School of Law, Peter Joy. He said that asbestos lawsuits have, in fact, sparked many criticisms of the legal profession, and questions about the ethics of soliciting for clients.

But, he said, those who have suffered because of asbestos exposure have a different view of the situation. For many, faced with mounting medical costs, the right to bring suit against the companies responsible for their illness is their only recourse.

But shouldn’t they have known the danger their job might be posing? some ask.

Joy says no. He points out that the asbestos industry and others who knew and understood the dangers of asbestos to their workers and to the public showed complete callous disregard for general safety.

The Mesothelioma Information and Resource Group estimates that the connection between asbestos exposure and lung cancer was noted as early as 1925, and confirmed over the next 70 years. But, Joy says, the industry buried information about the dangers and hazards in the interest of maintaining higher profits.

Remember that the incubation period of Mesothelioma and other asbestos-related cancers is a long one, remaining latent in those exposed for 30 to 40 years. By the time the dangers of asbestos were told to the public, it was too late for many people.

Even now, asbestos is still not even completely banned in the U.S.

Asbestos litigators, Joy points out, have actually been responsible for raising public awareness about asbestos and mesothelioma. The result is that people have more information, and they are alert to their risk level. They seek early screening, which may save their life.

We certainly don’t see these stories in our media. Maybe a blip here, or a brief story here, then it’s gone again. People in the U.S. assume asbestos is yesterday’s worry. Surely that was years ago, right? That was fixed, wasn’t it?

Who else is going to help asbestos disease sufferers beat this drum, when the still-real danger has been so effectively swept under the rug?

Joy summarizes that it’s hard to fault methods and measures that bring about awareness, and help people in desperate need find a little bit of justice, whatever cold comfort that might bring.

SOURCE: myMeso › Who Cares About Us?

Asbestos is Leading Risk Factor for Mesothelioma

The main risk factor for developing mesothelioma is exposure to asbestos. Asbestos refers to a family of fibrous minerals made of silicate. Asbestos was once used in many products such as insulation, floor tiles, door gaskets, soundproofing, roofing, patching compounds, fireproof gloves and ironing board covers, and even brake pads. As the link between asbestos and mesothelioma has become well known, the use of this material has almost stopped. Most use stopped after 1989, but it is still used in some products.

Experts have linked this drop in asbestos use to the fact that the rate of development of mesothelioma is no longer increasing [in the U.S.]. Still, up to 8 million Americans may already have been exposed to asbestos.

Exposure to asbestos particles suspended in air and building materials is much less hazardous except when they are being removed. Since asbestos is a naturally occurring mineral, it can also be found in dust and rocks in certain parts of the United States as well as the world. According to the U.S. Environmental Protection Agency, as many as 733,000 schools and public buildings in the country today contain asbestos insulation. As many as 10% to 15% of schools in the United States may contain asbestos insulation.

People who may be at risk for occupational asbestos exposure include some miners, factory workers, insulation manufacturers, railroad workers, ship builders, gas mask manufacturers, and construction workers, particularly those involved with installing insulation. Several studies have shown that family members of people exposed to asbestos at work have an increased risk of developing mesothelioma, because asbestos fibers are carried home on the clothes of the workers.

The incidence rate for mesothelioma in men is dropping, probably because they are no longer being exposed directly to asbestos in their work. But the incidence rate for mesothelioma in women is steady, which suggests that they are being exposed in a way that is not directly tied to work, but more to their environment either at home or work. One example would be asbestos in buildings where they work or live. A study from California also links mesothelioma to naturally occurring asbestos deposits in mountains.

Another important point about asbestos and mesothelioma is that the risk of mesothelioma does not drop with time after exposure to asbestos. The risk appears to be lifelong and undiminished. There are 2 main forms of asbestos — serpentine and amphiboles.

Serpentine fibers are curly and pliable. Chrysotile is the only type of serpentine fiber and it is the most widely used form of asbestos.

Amphiboles are thin, rod-like fibers. There are 5 main types — crocidolite, amosite, anthrophylite, tremolite, and actinolyte. Amphiboles (particularly crocidolite) are considered to be the most carcinogenic (cancer-causing). However, even the more commonly used chrysotile fibers are associated with malignant (cancerous) mesotheliomas and should be considered dangerous as well.

When asbestos fibers are inhaled, most are cleared in the nose, throat, trachea (windpipe), or bronchi (large breathing tubes of the lungs). Fibers are cleared by sticking to mucus inside the air passages and being coughed up or swallowed. The long, thin, fibers are less readily cleared, and they may reach the ends of the small airways and penetrate into the pleural lining of the lung and chest wall. These fibers may then directly injure mesothelial cells of the pleura, and eventually cause mesothelioma.

Asbestos fibers can also damage cells of the lung and result in asbestosis (formation of scar tissue in the lung), and/or lung cancer. The risk of lung cancer among people exposed to asbestos is increased by 7 times, compared with the general population. Indeed, asbestosis, mesothelioma, and lung cancer are the 3 most frequent causes of death and disease among people with heavy asbestos exposure.

Peritoneal mesothelioma, which forms in the abdomen, may result from coughing up and swallowing inhaled asbestos fibers. Cancers of the larynx, pancreas, esophagus, colon, and kidney may also come from asbestos exposure, but the increased risk is small. The risk of developing a mesothelioma is related to how much asbestos a person was exposed to and how long this exposure lasted. People exposed at an early age, for a long period of time, and at higher levels are most likely to develop this cancer.

Mesotheliomas take a long time to develop. The time between first exposure to asbestos and diagnosis of mesothelioma is usually between 20 and 50 years.

Asbestosis

asbestosis – Asbestosis is a breathing disorder caused by inhaling asbestos fibers. Prolonged accumulation of these fibers in your lungs can cause scarring of lung tissue and shortness of breath. Asbestosis symptoms can range from mild to severe, and usually don’t appear until years after exposure.

According to information provided by the Mayo Clinic, symptoms of asbestosis include shortness of breath, initially only with exertion but eventually even while resting; decreased tolerance for physical activity; coughing, chest pain, and even finger deformity (clubbing) in some cases.

Asbestosis may cause such a reduced flow of oxygen as to be disabling or even fatal. It can also lead to complications like high blood pressure in the lungs, heart problems, lung cancer, other lung damage including those affecting the lining of the lungs and chest cavity, the pleura. These include pleural thickening and hardening (pleural plaques), and abnormal accumulation of fluid between the layers (pleural effusion).

Asbestosis itself does not increase your risk of developing mesothelioma, but it indicates that you were exposed to asbestos and therefore are also at risk for developing malignant mesothelioma.

Adenocarcinoma

adenocarcinoma (A-den-oh-KAR-sih-NOH-muh) – Cancer that begins in cells that line certain internal organs and that have gland-like (secretory) properties.

Although commonly associated with lung cancer, adenocarcinoma is a type of cancer that develops in cells lining glandular types of internal organs, such as the lungs, breasts, colon, prostate, stomach, pancreas, and cervix. Another type of adenocarcinoma, mucinous adenocarcinoma, accounts for only 10-15% of all adenocarcinomas and is particular to aggressive carcinomas that are comprised of at least sixty percent mucus.

Non-small cell lung cancers make up over three quarters of all new lung cancer cases in the United States. While there is only one type of small cell lung cancer, there are three types of non-small cell lung cancer. The three types of non-small cell lung cancer are squamous carcinoma, large cell carcinoma, and adenocarcinoma. When adenocarcinoma develops in the lung’s air sacs, it is called bronchioalveolar adenocarcinoma. About forty percent of all lung cancer cases diagnosed today is adenocarcinoma.

Like other cancers, adenocarcinoma is the growth of abnormal cells. These cancerous cells multiply out of control and form a tumor. In the lung, as the tumor grows, it destroys parts of the lung. Eventually, the tumor’s abnormal cells can spread (metastasize) to other parts of the body, including the local lymph nodes in the chest and the central portion of the chest, called the mediastinum; the liver; the bones; the adrenal glands; and other organs, including the brain.

Adenocarcinoma is more likely than other types of lung cancer to be contained in one area of the body. If it is truly localized, it may also respond better than other lung cancers to treatment, especially surgical removal of the tumor and draining lymph nodes.

Adenocarcinoma is the most common form of lung cancer. Most of this type of cancer is found in smokers. However, it also is the most frequent type of lung cancer seen in nonsmokers. It is the most common form of lung cancer seen in women and people younger than 45.

As with other forms of lung cancer, you are more likely to get adenocarcinoma if you:

• Are exposed to asbestos. Asbestos is a fibrous mineral that is used in home insulation, fireproofing, tiles for floors and ceilings, automobile brake linings, and other products. It is believed that asbestos fibers can cause lung cancer. People at risk of lung cancer include workers who are exposed to asbestos on the job (miners, construction workers, shipyard workers and auto mechanics who work with brakes), and people who live or work in buildings in which building products that contain asbestos are deteriorating. In addition to the adenocarcinoma type of lung cancer, individuals who have been exposed to asbestos, and particular types of asbestos, are also at a significant greater risk of developing a specialized type of lung cancer called mesothelioma.

• Are exposed to other carcinogens in the workplace. These include uranium, arsenic, vinyl chloride, nickel chromates, coal products, mustard gas, chloromethyl ethers, gasoline, diesel exhaust and high levels of talc dust.

• Smoke cigarettes. Smokers have 13 times more risk of developing lung cancer than nonsmokers. Cigarette smoke is associated with most cases of adenocarcinoma. Smoking is by far the leading risk factor for lung cancer, substantially more significant than all the other risk factors combined.

• Breathe cigarette smoke. Nonsmokers who inhale the cigarette fumes of smokers have an increased risk of lung cancer.

• Are exposed to radon gas. Radon is a colorless, odorless radioactive gas that is formed in the ground. It seeps into the lower floors of homes and public buildings and can contaminate drinking water. Radon exposure is the second leading cause of lung cancer. It’s not clear whether elevated radon levels contribute to lung cancer in nonsmokers. However, research has shown that radon exposure contributes to increased rates of lung cancer in smokers and in people exposed to higher levels of radon, such as miners. You can test the levels of radon in your home and surrounding area by using commercially available radon testing kits.

Your doctor will ask you whether you smoke or whether you live with a smoker. If you smoke, your doctor will ask you how much you smoke and how long you have smoked. Your doctor also will ask whether you have worked in an industry where you may have been exposed to asbestos or other carcinogens.

Call your doctor promptly if you have any of the symptoms of lung cancer, especially if you are a smoker or you have worked in an industry with high exposure to asbestos.

The outlook depends on the stage of the cancer and the overall health of the patient. In general, the prognosis is poor, especially if the lung cancer has spread to areas outside of the chest wall or has involved the lymph nodes of the mediastinum. This cancer can only be cured when surgery or radiation therapy can completely remove the tumor. However, many lung cancers are diagnosed at a stage when this is not possible. About 17 percent of people with adenocarcinoma survive more than 5 years after diagnosis.

Asbestos exposure increases the risk of lung cancer by nine times. A combination of asbestos exposure and cigarette smoking raises the risk to as much as 50 times.

A person who has had lung cancer is more likely to develop a second lung cancer than the average person is to develop a first lung cancer.

Repeated respiratory infections, such as bronchitis or pneumonia, can be a sign of lung cancer.

Asbestos Information

Asbestos and asbestos containing materials are responsible for causing asbestos cancer and asbestos disease cases around the world. Two of the most dangerous forms of asbestos disease are mesothelioma and asbestosis. Asbestos has been used in thousands of products for more than a century because it is highly versatile, abundant, and relatively cheap. Since asbestos is a naturally occurring mineral, it requires no manufacturing. Instead, asbestos only has to be mined, crushed, and added into products during the manufacturing process. Since asbestos is basically a rock, it is highly impervious to heat. It also happens to be chemically inert. Since its basic mineral structure is shaped in long, thin fibers, it can be broken down into these fibers to add strength and flexibility to nearly any product. A characteristic of asbestos is what is known as tensile strength. It allows products to be flexible yet strong while not adding excessive weight. Asbestos is one of few minerals that can actually be woven. Asbestos was commonly woven into materials that made excellent insulators, but were too brittle to be used by alone because they would crumble. Asbestos made insulation products flexible and durable since it was not affected by heat. Asbestos is not a very effective insulator by itself. All these qualities add up to a very useful and inexpensive product but some of them also make asbestos toxic to those that inhale asbestos fibers. There are six forms of asbestos characterized by differences in structure and color. Asbestos is also divided into two categories: serpentine and amphibole asbestos. Serpentine asbestos is made of curly fibers and amphibole asbestos is made of long, straight fibers. Both types of asbestos are considered dangerous, though it is thought amphibole asbestos forms, including crocidolite and amosite, may be more dangerous to humans.

Asbestos Exposure

Unfortunately, there are many opportunities for asbestos exposure since asbestos was used so abundantly in both industrial and consumer products. Most people that develop asbestos cancer and other asbestos diseases, including mesothelioma and asbestosis, usually have a history of chronic exposure to asbestos. Mesothelioma is somewhat unique in this respect, as mesothelioma cases have developed in people with limited asbestos exposure. As a result, there is no established “safe” level of asbestos exposure. Workers are exposed to asbestos when the substance or products containing asbestos are cut, crushed, sanded, drilled or otherwise disturbed. When left undisturbed, asbestos-containing materials can be relatively safe. In cases where asbestos materials are mined, installed, removed, demolished, or serviced, exposure can be a risk unless strict asbestos abatement techniques are employed. When inhaled, microscopic asbestos fibers can make it past the body’s natural defenses and deep into the lungs causing asbestos disease. Once within the lungs, the fibers can irritate lung tissue leading to asbestos cancer. If asbestos fibers make their way to the alveoli or air sacs in the lungs where oxygen and carbon dioxide exchange takes place, they can cause irritation and scarring called asbestosis. Asbestos fibers that pass through the alveoli and into the pleural mesothelium, can eventually lead to asbestos cancer in the form of tumors and malignant mesothelioma.

Asbestos Products

The following is a list of products that commonly contain asbestos:Roofing shinglesFelt and tar joint compoundCement pipesWall boardCeiling tilesSiding gasketsLaboratory hoodsMastics and sealantsBrake liningsFire doorsInsulation on some wiringCooling towersPaintTaping compound (thermal)Flexible duct connectorsGreenhouse materialsAppliance insulationSheet vinyl floor coveringPlaster sprayed-on fireproofingRefractory cement chalk boardsInsulation on steam pipesHeat resistant gloves and suitsAsbestos blankets Cork Board

Asbestos History

Asbestos was first discovered to be dangerous at the beginning of last century. It has been known as a carcinogen since the 1960s and was subsequently banned in more than 30 countries under grounds that there is no safe level of asbestos exposure. Mining and manufacture of most asbestos products has been ceased in the U.S., yet we continue to import more than 30 million pounds of asbestos in foreign products each year. A new recommendation by an EPA-sponsored panel of asbestos industry members and other experts on the topic called for a ban of all importation, manufacture, and mining of asbestos and asbestos containing products in the U.S. Although this may be a good sign, it also means that new risks of asbestos exposure are still developing. Since asbestos cancer and asbestos diseases take years and even decades to develop, many more cases of asbestos disease will be diagnosed.

Asbestos Legislation

On March 1, 2007, Senator Patty Murray (D-WA) introduced S. 742: Ban Asbestos in America Act of 2007 to the 110th Congress. This is an act to amend the Toxic Substances Control Act to reduce the health risks posed by asbestos-containing materials and products having asbestos-containing material, and for other purposes. The bill is an effort to ban all production and use of asbestos in America , launch public education campaigns to raise awareness about its dangers and expand research and treatment of diseases cause by asbestos. Murray’s legislation, which was first introduced in the 107th Congress, will also authorize additional studies to determine which commercial products today still contain asbestos, increase funding for asbestos-related diseases, and call for a national mesothelioma registry to help public health professionals track this deadly asbestos-related disease. Studies estimate that during the next decade, 100,000 victims in the United States will die of an asbestos related disease – equaling 30 deaths per day. The bill passed in the Senate on Oct. 4, 2007 by Unanimous Consent.

Currently, the companion to this bill, H.R. 3339, the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007, is in committee in the House of Representatives. The House bill toughened the legislation, under the direction of the Environment and Hazardous Material Subcommittee of the House’s Energy and Commerce Committee, eliminating an exception for asbestos present at 1 percent or less by weight, making the ban a matter of federal statute rather than EPA regulation, and adding enforcement provisions. The bill must pass committee to make it before the full House for a vote.

Critically needed medical research funding provisions from Sen. Murray’s and Congresswoman McCollum’s legislation have not yet been added to the Committee Print. Supporters are urged to contact their Representative in Washington, DC, to urge inclusion of the research funding and swift passage of the complete bill once the funding is in place.

SOURCE: myMeso › Mesothelioma and Asbestos