An article published by the Daily Inter Lake, which serves Northwest Montana, reports on a new study by Dr. Alan Whitehouse, a pulmonologist affiliated with the Center For Asbestos Related Disease (CARD) in Libby, Montana. Dr. Whitehouse’s study, published in the American Journal of Industrial Medicine, predicts an epidemic of mesothelioma cases in Libby in the next 10-20 years.

Dr. Whitehouse, along with four other physicians including CARD’s Dr. Brad Black, studied 31 mesothelioma cases, including 11 cases not previously reported. The study focused specifically on non-occupational asbestos exposure, including exposure to contamination of the community, the surrounding forested area, and areas in proximity to the Kootenai river and the railroad tracks used to haul vermiculite.

It is estimated that more than 200 people in Libby have died from asbestos-related disease, and CARD is following 2,000 additional asbestos cases. CARD primarily serves Libby residents who were affected by the W.R. Grace-operated vermiculite mine, which was in operation for many years, and at high capacity from the 1940s to the 1970s.

Focus has recently shifted to include people suffering from asbestos disease and mesothelioma who never came into direct contact with the vermiculite mining operation. In June, the U.S. Department of Health and Human Services and the Environmental Protection Agency announced an $8 million grant to fund a five-year study of the effects of low-level asbestos exposure.

The Centers for Disease Control (CDC) recently announced a new program to provide $30 million in grant money for health screenings, assessments, monitoring and tracking, and improved access to health care services and treatments for those who may have been impacted by the World Trade Center collapse on Sept. 11. The grant will be available not only to first responders and other workers, but also to hundreds of thousands of Manhattan residents who live or lived near the Twin Towers.

The buildings’ collapse released thousands of pounds of hazardous material into the atmosphere, which may have included a combination of glass, asbestos, fiberglass, pulverized concrete, lead, mercury, cadmium, dioxins and PCBs. Construction of the World Trade Center buildings was begun before the use of asbestos was banned in the U.S., and some estimates say as much as 400 tons of asbestos fiber was in the buildings.

People near Ground Zero could experience a number of medical problems as a result of their exposure to this toxic dust, including respiratory problems and asbestos disease including mesothelioma.

In an official release from the CDC, Christine Branche, acting director of the CDC’s National Institute for Occupational Safety and Health (NIOSH), said, “These public health dollars extend the reach of our efforts so that they help support the provision of the health care services to residents, students, an others who were in the vicinity of the attacks of September 11, 2001.”

The release says the NIOSH-administered grants provide up to $10 million per year for three years, and the money can be used to help cover gaps when individuals’ public or private insurance is insufficient to fully cover the costs associated with care or treatment.

Funding will be provided to one to three organizations, with the deadline for proposal submission set for Aug. 25, 2008. For more information about how to apply for one of these grants, visit www.Grants.gov. The CDC encourages health and medical care facilities to apply.

The CDC says it already has invested at least $925 million in programs to support responders to the 9/11 emergency.

After years of ignoring the dangers of asbestos, and the resulting nationwide epidemic of asbestos disease, including mesothelioma, there is a renewed interest in studying this deadly material. This week, the Billings Gazette announced the federal government will fund an $8 million study to understand the health effects of low-level exposure to asbestos. The study will be based in Libby, Montana, where more than 200 people have died to date as a result of asbestos mining operations in the town, and hundreds more people suffer from asbestos related diseases.

The Libby program, dubbed the Libby Amphibole Health Risk Initiative, is funded by the Environmental Protection Agency and the Department of Health and Human Services’ Agency for Toxic Substances and Disease Registry. The study is expected to span 5 years with a goal of expanding knowledge about the potential and real health issues of asbestos exposure.

Libby already has proved a tragically rich source of knowledge about long-term exposure to high levels of asbestos, as the EPA’s initial examination and cleanup of the town focused on miners with direct exposure to the substance in their jobs, as well as people who handled asbestos mineral and were exposed to asbestos dust secondarily on a daily basis.

But, the Gazette reports, too little is know about exposure to lower levels of asbestos. EPA officials hope that results of the study will benefit not only the residents of Libby, but people throughout the country.

In April, the Minnesota state legislature approved $4.9 million for its own five-year study, to be conducted under the direction of the University of Minnesota, in connection with unusually high levels of mesothelioma affecting Iron Range mine workers. A large question in the area is whether dust from the taconite mined there – a fibrous mineral similar to asbestos – could also cause mesothelioma.

A key part of the Minnesota research will be an examination of previous asbestos exposure among mine workers, which will expand the base of knowledge about the affect of asbestos on health, in addition to the new studies about the effect of taconite.

According to the Billings Gazette, among tests to be included in the Libby study are a comparison of film and digital chest X-rays to determine which is best for assessing the lungs, a comparison of the health of people exposed to Libby asbestos in childhood versus people who weren’t, an expanded evaluation of Libby residents who were exposed to asbestos, an assessment of whether the health problems related to asbestos exposure extend beyond lung disease.

Researchers in Libby also hope to make improvements to public health tracking systems and patient health record databases, to better link exposure information to health conditions, the Gazette reports.

Gayla Benefield, perhaps one of the best-known residents of Libby for her early outcry about the health effects of asbestos on the people in her town, says she is happy to see an emphasis on research.

She was a charter member of the board of directors of the Center for Asbestos Related Disease (CARD), a not-for-profit clinic governed by a volunteer community board and devoted to healthcare, outreach, and research to benefit all people impacted by exposure to Libby amphibole asbestos. She only recently retired from her position with that organization.

“This is something I’ve wanted from the onset – more study and more research,” she says. “I’ve been especially interested in how much or how little of the (asbestos) fiber can cause meso, and I’ve been really concerned about the schools having been contaminated.”

The key, Benefield says, is to detect mesothelioma at its earliest stage, when there is still time for treatment to prolong life. When people around her in Libby began being diagnosed, she says, their mesothelioma was so advanced that many died within days of the diagnosis.

“We all – everyone in Libby – live under the threat of developing mesothelioma,” she says. “They’re never going to get all that (asbestos) fiber out of Libby, or anywhere for that matter, homes with asbestos insulation, so the research is the big thing. Any and all research having to do with mesothelioma is fantastic. A dream come true.”

A report in The Courier Mail, based in Queensland, Australia, says mesothelioma deaths could double in the coming years, as the disease begins to strike end users of asbestos products, like amateur home renovators.

According to the report, the “first wave” of mesothelioma victims were those who mined asbestos, and the second wave affected people who worked with asbestos in factories or manufacturing industries. The next wave, they say, is affecting people who work with asbestos materials, like construction workers.

In addition to mesothelioma, exposure to asbestos, which has been used in building materials in Australia for decades, also causes asbestosis and asbestos-related lung cancers.

Asbestos Diseases Foundation of Australia president Barry Robson is working with government officials for a national approach to education, treatment and compensation for asbestos-related diseases.

The Mesothelioma Applied Research Foundation (Meso Foundation) has issued an “action alert” urging its constituents to call on their House Representative this week to support prompt passage of The Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2007 (H.R. 3339), sponsored by Rep. Betty McCollum (D-MN).

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!

As part of my work to raise awareness about mesothelioma, other asbestos related diseases and lung cancer, I talk to a lot of people facing these diagnoses. I also read a lot of message boards and forums that deal with these issues and provide a sounding board for patients, families, caregivers and even medical professionals working in this field.

A couple of the best forums, in my opinion, are the Lung Cancer Alliance Survivors Support Community, and the many forums sponsored by the LUNGevity Foundation. Recently, both groups have been tackling a difficult topic – how to find joy in daily living when faced with a diagnosis that is often grim.

They ask, “what is the positive side of lung cancer? IS there a positive side?”

Many people credit the forums themselves as a positive, providing a network of new friends, and helping them to find a place where they can be uplifted by other people’s stories of success. They say forums like these help them find relief by sharing their own fears and finding answers to their questions, and by helping them learn they are not alone.

Many echo each other in their feeling that their experience with cancer has taught them to value each day, and not to wait for tomorrow to accomplish goals. That surely would be a blessing for all of us to learn, wouldn’t it?

Some lung cancer survivors handle their challenges with humor. Yesterday I mentioned Debbie, who lives in the UK, who started her own web site about her battle with mesothelioma, and who nicknamed her tumor “Theo,” and provides reports on his condition and sometimes addresses him personally in her blog.

A poster on the LUNGevity forum recently found the humor in a YouTube video, in which two teenage girls spoof a Justin Timberlake rap song, “My Love,” with their own version, “My Lung,” in which they express their affection for their lung health. It seems they made the video as part of a high school health project.

On a similar track, a friend who knows I write about lung cancer sent me a link to an odd little web site called “I Heart Guts,” which features, among other things, plush toys and t-shirts depicting happy, smiling internal organs, including a shirt bearing the slogan “I Lung You.”

What about you? If you have been diagnosed with mesothelioma or another asbestos disease or lung cancer, or if you are helping a family member or friend, how do you find peace and inspiration? What helps you?

One of the things I’d like for this site to do is to provide a resource for people struggling with meso, and a place to network and share ideas. Post your story to the Meso Map, or leave a comment to let me know what inspires you. Tell me if there’s another forum you like, or a web site with good information that I should add to my page’s blog roll.

This site is here for you.

Probably the most important mission of myMeso.org is to give you – people affected by mesothelioma, other asbestos-related diseases, and lung cancer – a place to tell your story. Whether you are personally struggling with the disease, or are helping a loved one or friend face this diagnosis, we want to provide a forum where you can share what you are going through.

To help you do this, and to help other visitors to myMeso.org find your story, we’ve added a new Meso Map feature. The Map is interactive, and will have markers showing where different people affected by mesothelioma, asbestos disease or lung cancer are located in the United States or around the world. Click on any marker on the map to read their personal story.

On the Map page, you can also access a form that makes it easy for you to submit your own story. You can share as little or as much personal information as is comfortable for you.

The Map can be easily found on the myMeso.org home page, at the top right – just look for the map with the words “Help Raise Awareness.” Or, visit this page directly by copying the link: http://www.mymeso.org/mesothelioma-stories-share-your-story and pasting it into your web browser.

Personal stories are SO important.

Telling your story may give you the outlet you need, to express the frustrations, joy, fear, successes, and anger – the whole range of emotions you experience.

Your story may provide guidance, comfort and a sense of community for people who are facing similar challenges. You may provide just the information about new clinical trials, about your experience with different treatment options, or an outstanding support group that is just what someone else is looking for.

Most of all, sharing your story will help us to put a human face on mesothelioma, which is critical to sparking action to fund research and find a cure.

Whatever you want to say, we’re ready to listen.

So please, visit our Meso Map page to read stories from mesothelioma and lung cancer survivors, and share your story!

A compromise has been reached in the Minnesota legislature over funding for a mesothelioma research study. MyMeso has been following the progress of a bill in the Minnesota House that would provide $4.9 million to fund a study of mesothelioma and asbestos disease in the state’s Iron Range miners. More than 58 taconite miners have died from mesothelioma or other asbestos disease.

There was some controversy over the source of the funding when the bill was introduced in the House. Gov. Tim Pawlenty objected to the proposed funding source, a special state worker’s compensation fund, fearing it would raise premium costs for businesses that use the fund. The governor had threatened to veto the bill unless an alternate funding source was established.

An amendment proposed by the Minnesota Senate yesterday afternoon would fund the bill from a Department of Commerce fund, which is an “assigned risk” worker’s compensation fund.

The money will fund a five-year research project headed up by the University of Minnesota, which will review the health of miners and spouses, study the health records and occupations of miners who died and analyze the air quality in and around the mining communities.

The Senate has indicated support of the revised bill, with a final vote expected early next week. It will then move back to the House, where it also is expected to be met favorably.

According to TwinCities.com, a Pawlenty spokesman said the governor supports the amended bill and “believes it’s very important that this study moves forward.”

Public Justice recently filed suit in federal and California state courts against CBS Broadcasting, Inc., Planet Toys, Inc., and several retail manufacturers in response to their production and marketing of CSI toy kits containing asbestos. Asbestos has been linked to mesothelioma, a deadly lung cancer, as well as other cancers, asbestosis and pulmonary fibrosis.

CBS licenses the toy, which is based on its popular CSI: Crime Scene Investigation ™ television program. Planet Toys is the manufacturer.

According to a Public Justice press release, the federal complaint, filed in U.S. District Court in Los Angeles, alleges that CBS and Planet Toys were negligent in their quality control measures and that they promoted the CSI toys although they contained a hazardous and potentially lethal carcinogen.

In November 2007, the Asbestos Disease Awareness Organization (ADAO) released results of a study of a number of products, including the CSI: Crime Scene Investigation ™ Fingerprint Examination Kit. It was found that the CSI toy’s fingerprinting powder contained asbestos. The fingerprinting powder containing asbestos also can be found in related CSI toy kits, the CSI: Crime Scene Investigation ™ Field Kit and the CSI: Crime Scene Investigation ™ Forensic Lab Kit.

The story was covered in the news media, including CNN, in December 2007. On Feb. 21 CNN did a follow-up report and noted that the Planet Toys had not yet issued a recall.

Public Justice reports that in a meeting including representatives from ADAO, CBS and Planet toys in December 2007, CBS and Planet Toys agreed to remove some of the toys from store shelves, and to work with Public Justice to further test the toys. However, Public Justice reports that months later, there has been no joint testing, Planet Toys continues to deny the products contain asbestos, and there has been no recall.

The Public Justice press release quotes Linda Reinstein, executive director of ADAO, who says, “Our pleas for the companies to do the right thing have fallen on deaf ears. It is unacceptable and unnecessary to have asbestos in toys, and especially in powder form, its most dangerous state. Most Americans falsely believe asbestos has been banned, but our recent product testing results prove asbestos remains a threat to public health.”

The federal complaint is a class action suit that asks the defendants to “provide refunds to consumers, pay for asbestos testing of toys that have been opened, and pay for appropriate medical treatment for consumers who have been exposed to asbestos,” according to the release. The state lawsuit “seeks civil penalties for violations of the law, in addition to injunctive relief.

Read the full text of the Public Justice press release here. This site also contains links to the federal and California state complaints.

Public Justice is a membership-supported law firm with more than 3,500 members, comprised of trial lawyers, other attorneys, and public interest advocates worldwide.

ADAO is a nonprofit organization dedicated to the mission of “asbestos awareness, education, advocacy, prevention, support and a cure.”

The physical result of mesothelioma and asbestos disease are often all-too evident. People wracked with pain, coughing, unable to catch their breath. But what about the mental toll of this disease?

Perhaps one of the most interesting presentations at the recent Asbestos Awareness Day Conference in Detroit, at least to me, was that of Rebecca J. W. Cline, PhD, a senior scientist in Communication and Behavioral Oncology for the Karmanos Cancer Institute and Associate Professor of Family Medicine at Wayne State University.

Dr. Cline recently conducted a community-based focus group investigation in Libby, Montana, on psychosocial issues related to vermiculite/asbestos exposure. She also is currently leading a related population-based survey investigating that community.

She describes asbestos related disease as a “slow-motion technological disaster,” in which community and social responses have a great deal to do with how people fare, mentally and socially.

The basic definition of a technological disaster is a “catastrophic event caused by humans that results in the toxic contamination of the environment.” This includes asbestos contamination, as in Libby, resulting from decades of vermiculite mining, hence “slow moving,” as well as things like oil spills, which can devastate an area fairly quickly.

Libby is the epicenter of what Dr. Cline calls “the worst environmental disaster in the United States,” with multiple generations affected. She examined in particular how stigma associated with asbestos disease can have an impact on what people do.

Dr. Cline said there are two possible responses to technological disaster – the emergence of an altruistic community, or a community in conflict. The latter, she said, is common where there is human culpability, and it was the result in Libby.

The Libby study, conducted in 2006, included focus groups and some individual interviews with adults who lived and worked in the Libby area for at least the past five years. Interview subjects included people with connections to the mine, people with no connections to the mine, people affected by asbestos disease personally, people with family affected by the disease, and people with no disease in family or person.

She found that people fell into three categories – early believers, those who immediately understood the connection of vermiculite to what was happening to the town; late believers, those who initially resisted the idea that the mine made people sick; and those in denial or conflicted, who still did not or would not believe the mine was responsible.

Dr. Cline found that there was a great deal of stigma attached to asbestos-related disease, which created a barrier to social support. People with mesothelioma or other asbestos-related diseases were often afraid to talk about it, she said, even to close friends.

She said that the stigma came from a variety of sources. Conflicts included concerns about the economic disaster that the loss of the mine signified for the town, for which it was the main industry and source of jobs and security. People feared that if the mine were blamed for illness and deaths in the community there would be a decline in property values, loss of jobs, and a lost way of life.

As a part or a result of that, conflict also grew from a concern about what was the truth. There was a suspicion among neighbors that people claiming illnesses were phony, money-grubbing, greedy or opportunistic, making up illnesses to get a part of a financial settlement from the mining company.

People suffering from asbestos disease personally or within their family were afraid to talk about it out of fear that they would be ostracized and shunned by their neighbors and their community.

Dr. Cline told the story of two women, best friends for years, who bumped into each other in the Center for Asbestos Related Disease, which had been established in Libby to test, diagnose and treat patients. “What are you doing here?” one whispered. “I have the asbestos,” the other whispered back. “Me too,” came the whispered response. Best friends, but afraid at the core to admit to having asbestos disease.

On top of this, people who are ill or whose family members are ill fear the health and medical disaster itself, which was already upon them. They said they felt a lack of hope for survival, not just for themselves or their immediate family, but for generations.

Some of those in denial, or conflicted, still refuse to be tested for asbestos disease. They don’t want to know, Dr. Cline says, or they do not believe the mine could harm them.

There appears to be one universal in Libby.

“Across the groups, people felt like the community as a whole had been stigmatized, that everyone ‘knew about Libby’ and it had been given a bad reputation,” Dr. Cline said.

In addition to the physical toll, the mental toll of asbestos disease in Libby has been incalculable, she said.