More than 230 people gathered in Washington, D.C., last week to attend the 6th Annual International Symposium on Malignant Mesothelioma, 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 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!

Yesterday at the 2009 International Symposium on Malignant Mesothelioma, the theme was all about hope. The day focused on patients, caregivers, and those who had lost loved ones to mesothelioma. The symposium is presented annually by the Mesothelioma Applied Research Foundation, which is a national non-profit organization dedicated to ending the sufferng caused by mesothelioma by funding mesothelioma reserach, educating patients, and advocating for funding for mesothelioma reserach.

The highlight of the events yesterday happened early in the day, but its effect reverberated for the rest of the day and into the evening’s banquet. The Tribute of Hope Ceremony was held yesterday morning. Those who had lost someone they love to this horrible asbestos-related cancer brought a photograph of their loved one and added it to a photo collage. The names of all those who had lost their battle were listed on panels lining the walls - too many panels - and grieving folks filled the space around them, lighting candles in memory of someone dear who didn’t have to die.

Although the rest of the day was filled with informative seminars about reserach, treatment, nutrition, wellness and coping, the weight of that wall could not be forgotten. Candles glowed and you couldn’t help looking over, reading the list, hating mesothelioma and wondering just WHY nobody seems to know about this lurking killer.

This is why we need more awareness.

The day ended with a Gala Celebration of Hope. Awards were presented to those who have done outstanding work in the fight against mesothelioma. From MARF, here is a list of those honored this year:

• The Pioneer Award emphasizes the contributions of Dr. Robert Taub, MD PhD, whose treatment protocols and vision have shown remarkable results and have been the basis of hope for many mesothelioma patients.
• The Bruce Vento Hope Builder Award, named for the late Minnesota Congressman who died from mesothelioma in 2000, acknowledges the support and initiatives of Terry Lynch, International Vice President, Political & Legislative Director and Health Hazard Administrator of the International Association of Heat and Frost Insulators and Allied Workers.
• The Volunteer of the Year Award honors Craig and Shelly Kozicki for being an inspiration to the mesothelioma community through their continued dedication in raising research funds and providing support and hope to others faced with mesothelioma. Craig, who had been diagnosed with mesothelioma in 1998, died in May of this year.

At the close of the awards presentation, a microphone was passed around the room to allow mesothelioma patients in attendance to share their stories. There were stories of victory and remission, tears and fears, laughter, and anger. A cry began to ring out as each fighter took the microphone. Turning, they would point at the looming Tribute Wall and declare, “I am not going on that wall!!!”

Today was busy with meetings at Capitol Hill, asking legislators to support a total ban of asbestos in the United States, funding for mesothelioma research, and that they designate September 26 as Mesothelioma Awareness Day.

The day began with a briefing from Chris Hahn, the executive director of the Mesothelioma Applied Research Foundation (MARF), with latest numbers about federal funding for meso research (WAY below every other cancer) and information about goals for new legislation. A bill to ban asbestos and fund meso research has been before the Senate for the past SEVEN YEARS. In 2008, S774, more commonly known as the Bruce Vento Ban Asbestos and Prevent Mesothelioma Act, passed the Senate, and in 2008 its companion, HR3339/6903, made it to committee in the House of Representatives, but never made it to the floor. It died in committee when the session ended and we now have to start all over.

Beginning at 11 a.m., I met with aides from Congressman Bobby Bright’s office, as well as the offices of Senators Richard Shelby and Jeff Sessions. I was disappointed that I was unable to meet with any of the legislators personally, but two of the aides were particularly enthusiastic about our efforts, and the third was amenable, so I have high hopes. Now I will simply begin to pester people until we finally see some legislation! I left copies of our petition in support of these efforts with each of the Congressional offices, so I hope they will listen to our voices!

Tomorrow the sixth annual International Symposium on Malignant Mesothelioma will address the latest topics in mesothelioma research and treatment. 170 people attended the Advocacy Day today, and 230 people will attend the conference tomorrow and Saturday, the largest number yet.

Chris Hahn told us, “The way that we’re going to cure this disease is through community. On Advocacy Day, each person’s voice makes a real difference, and each of you speak for hundreds who could not be here.”

I hope our legislature is listening.

I am in Washington, DC, to attend the 2009 International Symposium on Malignant Mesothelioma, 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 asbestos in the U.S., and funding for mesothelioma 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.

On Tuesday, June 9, House Bill No. 211 was introduced in the Ohio legislature, which would designate September as “Mesothelioma Month” in the state. The bill is sponsored by Ohio State Representative Kenny Yuko (D-7th District), and co-sponsored by Reps. Hagan, Ujvagi, Evans, Domenick, Oelslager, Newcomb, Fende, Skindell, Winburn, Okey, Letson, Luckie and Bacon.

H.B. 211 would enact section 5.2239 of the Revised Code to read as follows:

Sec. 5.2239. The month of September is designated as “Mesothelioma Month” to bring attention to mesothelioma, a rare form of cancer that develops in the mesothelium, a protective sac that covers most of the body’s internal organs, and is commonly linked to asbestos exposure.

Rep. Yuko has a special passion for supporting quality of life initiatives for Ohio’s working families. He has established himself as an advocate for increased health care access, and is strong supporter of Multiple Sclerosis awareness. IN 2006 he introduced and achieved passage of H.B. 379, which designated March as MS Awareness Month in the state of Ohio. He is chair of the House Commerce and Labor Committee.

If you live in Ohio, please contact your legislative Representative and ask him or her to support this bill designating September as Meothelioma Month in Ohio!

Contact the Ohio Legislature.

In researching for my upcoming visit to Washington, D.C., to attend the International Symposium on Malignant Mesothelioma, I was encouraged to find some news from the office of Congressman Dennis Kucinich (D-OH). He has recently gone on the record with strong objections to the continued use of asbestos in America and around the world. Asbestos, of course, is linked to mesothelioma as its only proven cause.

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.

As those of you who follow this blog probably already know, I’ll be traveling to Washington, D.C., next week to attend the 2009 International Symposium on Malignant Mesothelioma, which is being presented by the Mesothelioma Applied Research Foundation (MARF). On Friday morning, a regular part of the conference is a Tribute Ceremony to honor those who have lost their struggle against mesothelioma. This is a poignant time to recognize those who were so needlessly lost, and to provide a way to communicate the urgent need for funding for research and treatment.

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!

A recent report published in blood, the Journal of the American Society of Hematology, is examining a possible increased risk for malignant mesothelioma among patients exposed to radiation treatment for Hodgkin lymphoma. According to the study, whose lead author is Marie L. DeBruin, increased risks for second primary mesothelioma after radiation for lymphoma have been reported. Mesothelioma is primarily related to asbestos exposure.

According to the journal summary, the findings are based on a small number of patients, so researchers are approaching these results with caution and anticipate more study to confirm the results. The team examined mesothelioma in 2,567 five-year survivors of Hodgkin lymphoma, who had been treated with radiation alone, chemotherapy alone, or a combination of the two.

The study indicated that mesothelioma risk was almost 30 times greater in Hodgkin lymphona patients treated with radiation than in the general population.

The journal article was summarized by HemOncToday, which reports clinical news in oncology and hematology. The publication says the median follow-up period for patients included in the radiation-mesothelioma study was 18.1 years, at which time researchers found 13 patients had malignant mesothelioma at least five years after being treated for Hodgkins lymphoma.

HemOncToday reports there were no cases of mesothelioma among patients treated with chemotherapy alone, but that patients treated with both radiation and chemotherapy were almost 44 times more likely to develop malignant mesothelioma.

Harry S. Jacob, MD, HemOncToday chief medical editor, provided this perspective:

“Seminal studies by Scripps Research Institute investigators demonstrated that asbestos with high-iron content (as opposed to low-Fe level asbestos) was more likely to cause mesotheliomas in miners. In vitro iron-asbestos promoted oxygen radical generation that altered DNA, providing rationale for the epidemiologic studies. The combination of radiation-mediated oxygen radicals plus lung iron asbestos (or tobacco-mediated iron deposition) may underlie these findings.”

There is much debate over the issue of nanotechnology, with recent reports swinging to the positive side of the spectrum. Scientists at the University of Arkansas at Little Rock Nanotechnology Center say nanotechnology may provide an avenue for physicians to track cancer cells in the body, and enable targeted treatment.

A recent report in the Arkansas Democrat-Gazette says the scientists, led by Alexandru Biris, assistant professor and the chief scientist at the university’s Nanotechnology Center, have developed a technique for attacking cancer cells by injecting them with nanoparticles a few thousand times smaller than the diameter of a human hair, then heating the particles with low-frequency radiation. The heat kills the cancer cell completely. The nanotechnology scientists are working in cooperation with physicians from the University of Arkansas Medical Sciences department.

The Gazette article quotes Dr. Piotr Grodzinski, director of the National Cancer Institute’s Alliance for Nanotechnology in Cancer as saying the concept of using nanoparticles to treat cancer isn’t new, but that the type of nanoparticle developed by the Little Rock team is groundbreaking. The Little Rock team usues a highly magnetic cobalt particle surrounded by layers of graphitic carbon.

Scientists at the UALR Nanotechnology Center have had promising results from initial research, killing about 98 percent of cervical cancer cells used in the study. Before they can move into clinical trials with human beings - at least two years away - they must investigate a number of issues, including how the technique will affect surrounding tissues and how to reduce the toxicity of the metals used in the nanoparticles, among others.

It is the mission of the Nanotechnology Center at UALR to “advance the science of Nanotechnology through research and outreach and accelerate technological innovations into practical applications for society.” The Center received $5.9 million in funding from the Arkansas State Goverment in 2006, which helped the program garner an additional $1.9 million in federal grant funding.

Read the full article online at the UALR Nanotechnology Center web site.

Nanotechnology has raised safety concerns in the past as a concern for mesothelioma. Last May, this site featured information from an article published in the scientific journal Nature Nanotechnology, which likened the effect of carbon nanotubes to asbestos fibers when introduced into the body.

The UALR Nanotechnology Center acknowledges that as with exposure to asbestos, nanotubes can be potentially dangerous if the tiny fibers are inhaled, noting that manufacturers, lab researchers, suppliers and other professionals who handle nanotubes are at risk and should use protective clothing. The Center also recommends appropriate ventilation in areas where carbon nanotube fibers may become airborne. Scientists are still examining the possible connection between carbon nanotubes and mesothelioma.

There is an interesting opinion column published in the Saturday, May 16 issue of The Billings Gazette, urging Montana residents to beware of asbestos danger. The piece, published in the wake of the W.R. Grace & Co. trial, which acquitted the vermiculite mining company of criminal responsibility in the contamination of the town of Libby, Montana, warns of widespread vermiculite danger throughout the state, and beyond.

Penned by Bruce Ingraham, a resident of Butte and president of the Asbestos Contractors and Consultations Association of Montana, the column points out that vermiculite asbestos mined in Libby was shipped throughout the state of Montana and across the country by railcar. He notes that nearly 90 percent of mesothelioma cases reported in Montana occur in communities along the railroad lines, where, he says, “literally trainloads of vermiculite were used as attic or wall insulation in your home or your neighbor’s home.”

Mesothelioma is a deadly cancer most often affecting the lining of the lungs, but which also may in rarer instances affect the lining of the abdomen and/or the heart. It is solely caused by exposure to asbestos. There is currently no proven cure for mesothelioma.

Among the materials Mr. Ingraham includes on his list of asbestos hazards are boiler pipes, floor tile, linoleum, popcorn texture, ceiling tile, drywall compound, plaster and window putty. He notes that asbestos is present in many construction materials even in structures built as late as the 1990s.

Part of the problem in Montana, he says, is that compliance with the state’s Department of Environmental Quality Asbestos Control Program (ACP) is voluntary when it comes to residential projects, and that there is widespread noncompliance. Homes and apartments with less than four units are exempt from asbestos regulations, Ingraham says.

On its web site, the ACP says that the State of Montana has a specific homeowner asbestos exclusion rule for homeowners conducting renovation or demolition projects. Under this rule, homeowners are not held to the state’s asbestos abatement laws as long as asbestos-containing materials will not affect anyone besides the owner himself, or anyone outside the homeowner’s private property.

The ACP notes that the exclusion rule only applies to the homeowner, and does not extend to any contractors hired by a homeowner. According to the ACP, “Contractors who conduct demolition, renovation, remodeling, or asbestos abatement activities in a home are obligated to follow OSHA regulations and other applicable regulations. According to OSHA, the contractor must exercise due diligence by inspecting for asbestos to determine whether materials that will be impacted contain asbestos.”

But because compliance is not required on residential projects, these regulations are very often overlooked, Ingraham says. All too often, he says, the presence of asbestos is ignored by homeowners and contractors, and as a result, hundreds of Montana workers are exposed to asbestos without their knowledge, he says.

“In some Montana communities, the noncompliance rate for asbestos is 90 percent,” Ingraham writes.