Posts Tagged ‘Washington’

ADAO provides a voice for workers at ‘OSHA Listens’ hearing

15 Mar 2010 by Wendi Lewis under News

oshalistens banner2 ADAO provides a voice for workers at OSHA Listens hearingLinda 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 . 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 in 2004 as a result of his exposure to 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 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 exposure.”

Reinstein also took the opportunity to ask OSHA’s leaders to support pending legislation that calls for a complete ban of in the U.S.

“Clearly, one life lost to 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 -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.


Registration now open for Meso Symposium

11 Mar 2010 by Wendi Lewis under Events, News, Organizations

MARF_logo squareThe Applied Foundation (Meso Foundation) announced registration is now open for the 2010 International Symposium on Malignant . The event is set for June 10-12 in Washington, D.C. The annual event includes science presentations from leading 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 patients and their families travel to Capitol Hill to meet with their Senators and Representatives to ask for increased funding for and treatment, and for the complete ban of 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 , 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 Foundation toll free at 877-363-6376.


Awareness, educational materials available from Meso Foundation

1 Dec 2009 by Wendi Lewis under News, Organizations

MARF_logo squareThere are tons of new educational, outreach and materials now available from the Applied 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 , which was held in Washington, D.C., in June. The newsletter includes photos from the event and a wealth of information about and advocacy, as well as personal stories from 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 Foundation online at www.curemeso.org. There also is an archive of past newsletters on the site.

Another exciting resource available at the 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 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 Foundation is accomplishing in its mission to find a cure for .

If you have any questions or need assistance, you may call the Foundation at (805) 456-7272 or call them toll-free at 877-END-.


Victims of asbestos — Virgil and Cheryl’s story

24 Sep 2009 by Wendi Lewis under Events, News, People

Virgil CottonIt was Cheryl Cotton’s third time attending the Applied Foundation’s annual International Symposium on Malignant 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 and for funding for .

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 on May 31, 2005, just two days after their 40th wedding anniversary. She began attending the 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 . 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 , Cheryl found the Applied Foundation, a non-profit organization dedicated to the elimination of through outreach, education and funding 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 ” 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 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 Foundation’s annual International Symposium on Malignant , 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 , and to fund . She is also active in her community, talking to people about the dangers of asbestos exposure and about . She takes brochures about 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 , 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 pin. People need to know 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.

patients and their families are victims,” Cheryl says. “They are victims of . And all of this COULD and SHOULD have been avoided!”


DOE construction workers report high incidence of mesothelioma

10 Sep 2009 by Wendi Lewis under News, People, Research/Treatment

DOE logoA 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 , 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 , 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 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, 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 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


Meso widow donates $3000 for walking trail in memory of her husband

31 Aug 2009 by Wendi Lewis under News, People

It seems that I am surrounded by stories of strong women who are enduring the loss of their husbands as a result of . In the middle of last week, I had lunch with my friend Cheryl Cotton, in Anniston, Ala., who lost her dear husband, Virgil, to three years ago. She and I met at the Meso Symposium in Washington, D.C., in June and have been corresponding by email ever since, but it was a treat to get to visit her in person. I’ll be featuring her story on this site in September, during the week leading up to Day, on Sept. 26.

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 . 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 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 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 has made them more visible to me? I hope that it means that there is more in the United States, and around the world, of , and the dangers of the 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.


Mark your calendar for mesothelioma, asbestos awareness events

17 Aug 2009 by Wendi Lewis under Events, News, Organizations

Proclamation2 Mark your calendar for mesothelioma, asbestos awareness eventsIt’s not too early to begin making preparations for Day, September 26. The Meso Foundation has a helpful toolkit on its web site, that will assist you in planning events in your area. There are two main activities encouraged – a radio public service announcement (PSA) campaign, and a proclamation from your local government to declare Day in your community.

Here at myMeso, we have had great support for both Day and 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 Foundation.

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

  • The Disease Organization (ADAO) has announced its Sixth Annual International 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 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 disease. Visit the ADAO web site for more information, and make plans now to attend.
  • The Applied Foundation ( Foundation) announced the 2010 International Symposium on Malignant 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 , and the progress being made in and treatment of -related diseases like . They also are a wonderful way to network and make connections with other people who are fighting the battle to prevent and cure .


Access to mesothelioma treatment limited, difficult

13 Jul 2009 by Wendi Lewis under Events, News, Research/Treatment

Among the most interesting discussions at the recent International Symposium on Malignant , held in Washington, D.C., June 25-27, was a panel discussion about the challenges of finding treatment once a patient is diagnosed with . The panel featured physicians from three of the leading programs in treating peritoneal mesothelioma, Dr. Paul Sugarbaker, Dr. H. Richard Alexander, and Dr. John Chabot.

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

The current “best practice” for the treatment of 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 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 . 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 , 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 , and no established surgical training programs specifically for this field to develop more doctors experienced in mesothelioma treatment.

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

Even if is high and a patient is diagnosed early enough to be a viable candidate for successful treatment, the logistics of receiving treatment can be difficult. Most of the centers for 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 and treatment centers, and to expand access to that and treatment.

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


Mesothelioma community rallies to raise awareness, find a cure

30 Jun 2009 by Wendi Lewis under Events, News, Organizations, Research/Treatment

washington dc all photos 013 100x100 Mesothelioma community rallies to raise awareness, find a cureMore than 230 people gathered in Washington, D.C., last week to attend the 6th Annual International Symposium on Malignant , presented by the Mesothelioma Applied Research Foundation. This was the largest attendance to date for the event, and 170 of that number also participated in Advocacy Day events, visiting their Congressional delegates on Capitol Hill.

This annual symposium is “for everybody” affected by . This includes patients, caregivers and family members, and those who have lost a loved one to , as well as advocates and scientific and medical experts. The event is designed to provide education about new 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 about and the dangers of asbestos exposure, and to raise funds for .

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

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 , 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 Applied Reserach Foundation is the largest independent program for reserach and support in the world. It operates a competitive grant program that awards up to 10 grants, or $10 million, each year to 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 .”

MARF needs funding. This is the only organization dedicated to the and treatment of , 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 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 will be diagnosed each year.

, 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 . is everybody’s problem. We cannot afford NOT to support .

For more information about the Applied 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 and the effects of 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 , 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!


MyMeso goes to Washington

25 Jun 2009 by Wendi Lewis under News

dc washington monument 225x300 MyMeso goes to WashingtonI am in Washington, DC, to attend the 2009 International Symposium on Malignant , which is being presented by the Mesothelioma Applied Research Foundation. This morning a group of us will go to Capitol Hill to talk to our legislators about a complete ban on in the U.S., and funding for reserach and treatment. Thank you to everyone who signed the petition to ban asbestos! If you have not yet signed, it’s not too late! Click on the link on the home page and add your name and, if you like, some thoughts on this issue.

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