myMeso.org | Mesothelioma Blog

This is a reminder to those who haven’t yet contacted their representative in U.S. Congress about H.R. 3339, the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act. Please take the time to do this right now! It’s very important to let your Representative on Capitol Hill know that you support this measure to finally ban asbestos in the U.S. and provide funding for mesothelioma research.

The bill is currently in committee, with the House Committee on Energy and Commerce. Even if your district’s representative is not on this committee, it is important to let him or her know that you support the bill so that they know how to vote. The more voices they hear from their constituency, the better chance they will pay attention when this finally comes to the House floor.

If your representative IS a member of this committee, it is even more important. Many bills “die” in committee, never making it to a vote of the full House or Senate. Please make sure your representative helps get this bill approved in committee and to the floor for its vote.

My representative, Terry Everett (2nd District, Alabama), acknowledged his receipt of my request with a letter, in which he said he will keep my thoughts in mind should the bill make it to the floor, although he is not a member of the Committee on Energy and Commerce.

According to information provided by Everett’s office, H.R. 3339 would require several actions to be taken by the federal government in addressing asbestos and its harmful effects. The Environmental Protection Agency (EPA) would establish a plan to increase awareness of the dangers posed by asbestos-containing materials in homes and workplaces and encourage participation in research and treatment endeavors of asbestos-related disease patients.

The bill also would require the disposal of asbestos-containing materials within two years and the prohibition on the importing, manufacturing, processing or distributing of asbestos-containing materials, except for specific exemptions sought by the Department of Defense and National Aeronautics and Space Administration.

If you are not sure of the representative for your Congressional District, visit the House of Representatives online. You can also find out here if your representative is a member of the House Committee on Energy and Commerce.

Please take the time to do this today. Your one voice is SO important. Let it join thousands of others to finally make a real difference.

I was very sad today to learn that Rear Admiral Phil Coady, U.S. Navy (Ret.) passed away yesterday, June 30. Admiral Coady served as Chairman of the Board for the Lung Cancer Alliance, and was kind enough to share his story with this blog in April. A non-smoker, Coady was diagnosed with non-small cell lung cancer in 2005. The diagnosis spurred him to advocacy, particularly on behalf of Veterans.

Although Coady didn’t suffer from mesothelioma, he was 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 said he saw what he thought was a disproportionate amount of lung cancer deaths.

When he began investigating lung cancer research efforts, Adm. Coady was shocked at the relatively few dollars spent by the Veterans Administration and the U.S. Department of Defense, considering the number of veterans affected by the disease. He also was disappointed at the overall lack of funding for lung cancer research in comparison to spending on other cancers, especially since lung cancer is the leading cancer killer.

He dedicated himself as Chairman of the Board for the Lung Cancer Alliance, fighting the battle for lung cancer awareness and funding under the organization’s motto “No More Excuses. No More Lung Cancer.” He led efforts in lobbying Congress to make lung cancer a national health priority.

Just last week, Coady saw some of the first fruits of his efforts, when Senators Dianne Feinstein (D-CA) and Chuck Hagel (R-NE) introduced legislation in the U.S. Senate creating and authorizing at least $75 million for lung cancer research. This is the first ever multi-agency, comprehensive program targeted at reducing lung cancer mortality.

Perhaps the best memoriam Adm. Coady could receive is for supporters of lung cancer awareness and research to contact their U.S. Senators NOW and ask them to add their support to S. 3187, the Lung Cancer Mortality Reduction Act. Remember him and take action for those to come after him! You can view his obituary here.

Blessings to Adm. Coady’s family at this time of loss.

The Mesothelioma Applied Research Foundation (MARF) will hold its International Symposium on Malignant Mesothelioma 2008 in Washington, D.C., June 26-28. The annual event 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.

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.”

Canada is one of the few countries that still mines and produces asbestos, which it exports to countries such as India, Indonesia and Pakistan for use in construction material. Quebec, where Canada’s two asbestos mines are located, has one of the highest rates of mesothelioma in the world.

This week, according to a report by the Canadian HR Reporter, the Canadian Labour Congress is calling for a ban on the mining, and a financial support plan for the approximately 700 miners who would be affected by the industry closure.

The call for the ban comes despite delays in making public the results of a scientific study examining the health risks of asbestos. According to CBCNews.ca, “Michel Arsenault, president of the Quebec Federation of Labour, in February convinced his colleagues at the Canadian Labour Congress not to call for a ban on asbestos mining until after the study was completed and made public.”

The study, conducted under the direction of Health Canada, was begun last November by a team of seven scientific and medical experts. According to CBC, the report was completed in March and promised to be released in weeks. Experts who worked on the project are objecting to the delay in releasing the report.

CBC quotes Leslie Staynor, head of the School of Public Health at the University of Illinois, who worked on the study, as saying, “I want to make the record clear that nothing in the report would argue against the sensibility of an asbestos ban in Canada or for that matter anywhere else in the world.”

The CBC report points out that asbestos has been called a “deadly threat” by the International Labour Organization, the World Health Organization, the International Association for Cancer Research and many more health agencies.

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!

The prevalence of asbestos, especially through the mid-1970s, has put millions of Americans at risk for mesothelioma, a painful, usually lethal cancer almost always related to asbestos exposure. Among the hardest hit are U.S. veterans who were exposed occupationally, especially in Navy ships and shipyards.

According to the U.S. Department of Veterans Affairs, there are currently 25 million living individuals who have served in the United States’ armed forces. It is believed that a great number of them were exposed to toxic asbestos-containing materials during military service.

Every ship and shipyard built by the Navy before the mid-70s was fitted with numerous asbestos-containing materials. These materials were extensively used in engine and boiler rooms and other areas below deck for fire safety purposes, as well as in other areas of the ship. In fact, virtually no portion of a naval ship was asbestos-free between the 1930s and mid-1970s.

Unfortunately, veterans have little recourse when diagnosed with mesothelioma they believe to be the result of asbestos exposure during their time of service. Because asbestos use was so widespread before the first bans in the 1970s, it is very difficult for veterans to prove that asbestos exposure occurred only in military service.

Veterans are not legally allowed to seek compensation for mesothelioma and other asbestos-related diseases from the U.S. government through the court system. Ailing veterans must file a claim against the asbestos manufacturer, and they also have the legal option to seek assistance through The U.S. Department of Veterans Affairs (VA).

The VA is a government-run benefit system that is responsible for administering benefit programs to veterans, their families, and survivors. It is an incredibly complex system that comprises the second-largest federal department, after the Department of Defense. A search of the organization’s web site turns up no information about asbestos or mesothelioma. However, there are some organizations, such as Veterans Assistance Network (www.va-claim-help.com), that can help veterans wade through the VA benefits system.

Lung cancer is usually an indolent cancer that takes years to develop, thus the burden of treatment is falling most heavily on the VA. Late stage lung cancer is twice as costly to treat as early stage.

In February the Lung Cancer Alliance (LCA) announced that for the second year in row a coalition of top veteran organizations is calling for a screening program for veterans at high risk of lung cancer, to be included in the Independent Budget for Fiscal Year 2009 (FY09). This highly regarded comprehensive alternative budget addresses the most urgent needs of veterans, and urges Congress and the Department of Veterans Affairs to initiate a $3 million pilot screening program for veterans at high risk.

The AMVETS, Disabled American Veterans, Paralyzed Veterans of America and the Veterans of Foreign wars are the four co-authors of this document. More than 50 organizations support the Independent Budget.

A research program carried out by the International Early Lung Cancer Action Program at 40 centers in 26 states and 6 foreign countries during the past 13 years indicates that CT screening can detect lung cancer at Stage 1 in 85 percent of cases, and those treated immediately had a 10-year survival rate of 92 percent. By partnering with these types of programs, the Veterans Administration could quickly implement a pilot screening program for veterans at high risk, with a broad geographic reach and significant cost savings.

Rear Admiral Philip J. Coady, USN, (Ret.), chairman of LCA’s Board of Directors said, “Lung cancer continues to kill more men and women every year than all the other major cancers - breast, prostate, and colon - combined, and our veterans are at even higher risk, especially those whose active duty service exposed them to Agent Orange, asbestos, spent nuclear fuels, propellant gases and other carcinogens.”

Admiral Coady, a 34-year Navy veteran who never smoked, was diagnosed with lung cancer three years ago.

“Because there are usually no specific symptoms, most people are diagnosed so late they die within a year,” he pointed out. “Yet advanced CT technology that can diagnose lung cancer at its earliest, most curable stage is available right now, and high-risk veterans not benefiting from this is wrong,” he said.

Sources: asbestos.com, VAWatchdog.org

In March, I posted that for the first time the Department of Defense (DoD) had appropriated funding for mesothelioma research as a priority within the department’s Medical Research Program, thanks in most part to the lobbying efforts of the Mesothelioma Applied Research Foundation (MARF, Meso Foundation). Today, TheHill.com reports that MARF, with the backing of more than a dozen senators, is pushing for continuing and increasing funds for mesothelioma research in the 2009 defense appropriations bill.

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.

The stigma of lung cancer

Rear Admiral Phil Coady, U.S. Navy (Ret.), now serving as chairman of the board for the Lung Cancer Alliance, was never a smoker, and was surprised at the reactions of friends, family and co-workers when he told them he had lung cancer. They said he was brave for sharing the true nature of his illness.

“With lung cancer, there’s a real stigma attached to it. People don’t mention it in obituaries. There’s this perception that people with lung cancer brought it on themselves. I was never a smoker. Twenty percent of the women with lung cancer who are coming down with it every year have never been smokers.”

The stigma tends to inhibit discussion of lung cancer, Coady says, which impacts funding for research. If nobody is talking about it, the awareness just isn’t there, and it is treated as out of sight, out of mind. Meanwhile, lung cancer kills more people each year than breast, colon and prostate cancer combined. Ninety-two percent of people diagnosed with lung cancer die from the disease.

“I believe intently that the solution to lung cancer is making people aware that it is a public health problem and developing a public policy program. National priorities have not been adjusted to make this a national priority,” Coady says. “LCA’s first mission is to get before Congress to make this a national priority. Then, we go back to Congress and put some dollars behind it.

“The numbers we have all stated about the number of people who have died from lung cancer are compelling. It’s a half a million people every three years. There is no other cancer that comes close. But there’s almost no public funding.”

One current lobbying effort involves approaching state legislatures to gather support for an initiative that would donate 1 percent of tobacco tax revenue or tobacco liability settlements collected by state government for lung cancer research.

“Right now we’re using that money to build roads, schools, other infrastructure, but nothing to do with the cancer,” Coady said.

Next: Personal help for those with lung cancer

The U.S. House of Representatives will hold a hearing on Feb. 28, 2008, to discuss asbestos. In the next decade, it is estimated that 100,000 people - 30 per day - will lose their lives as a result of asbestos exposure.What can you do?

1. Sign the petition. The ADAO (Asbestos Disease Awareness Organization) has created a petition asking Congress to totally ban asbestos in industrial materials, consumer products and toys. Visit this website to add your name to this petition: http://www.gopetition.com/petitions/totally-ban-asbestos.html
2. Contact your Representative. Visit http://www.house.gov/ to find your Representative and write him or her to ask for careful consideration of this issue in the hearing, and in support of the Ban Asbestos in America Act of 2007.

On March 1, 2007, Senator Patty Murray (D-WA) introduced S. 742: Ban Asbestos in America Act of 2007 to the 110^th 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.The bill passed in the Senate on Oct. 4, 2007 by Unanimous Consent. A record of each representative’s position was not kept.The bill now goes on to be voted on in the House.

• Asbestos is Leading Risk Factor for Mesothelioma
• Adenocarcinoma
• Asbestos Information
• Asbestos Exposure
• Asbestos Products
• Asbestos History
• Asbestos Legislation

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, insulat