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.

Today, the U.S. Senate is considering landmark legislation that will create a multi-agency, comprehensive program to target lung cancer, and that will authorize $75 million for the first phase of a five-year program to reduce lung cancer mortality. the Lung Cancer Mortality Reduction Act of 2008 was co-sponsored by Sen. Dianne Feinstein (D-CA) and Sen. Chuck Hagel (R-NE). Mesothelioma sufferers can benefit as a result of this increased focus on lung cancer research and early detection.

Senators Feinstein and Hagel were instrumental in authoring a policy resolution in 2007 to designate lung cancer as a public health priority, which was passed unanimously. The resolution called for research, better treatments, and early detection, with a goal of reducing lung cancer mortality by 50 percent by 2015.

This new bill would establish that comprehensive program under law and authorize funding, according to a release from the Lung Cancer Alliance, which today issued a call to action for its support.

“We have seen great advancements in prostate and breast cancer survival rates and we must commit ourselves to making the same progress with lung cancer,” Sen. Hagel said, noting that lung cancer currently accounts for 28 percent of all cancer deaths in the United States.

Each year, lung cancer kills more people than breast, prostate, colon, kidney, melanoma and liver cancer, combined.

Senator Feinstein said, “It’s time for the federal government to step up its efforts and make fighting lung cancer a national priority.”

Contact your Senator TODAY!

Meso victims, unite! The Lung Cancer Alliance recently sent an Open Letter to presidential candidate Hillary Clinton following remarks she made pledging funding for breast cancer, asking her to also prioritize funding for lung cancer.

Following is the text of the open letter, along with information about how to contact Clinton’s office. The LCA is urging everyone affected by lung cancer, including mesothelioma, to join their voices in this effort to finally secure the funding that lung cancer has long deserved. It is time to make this a national priority!

An Open Letter to Presidential Candidate Hillary Clinton

April 9, 2008

Yesterday you announced what you would do for breast cancer should you be elected president. When will you announce what you would do for lung cancer?

The $300 million plan you unveiled yesterday to find a cure for breast cancer should be at least doubled for lung cancer since it is killing nearly twice as many women each year as breast cancer. Most women do not even know this.

You do, Senator Clinton, and you specifically cited that fact as part of the justification for Senate Resolution 87, which you co-sponsored and supported and which was passed August 2, 2007. The resolution was a strongly worded policy statement by the Senate calling on the President to declare lung cancer a public health priority and to implement a comprehensive interagency program to reduce lung cancer mortality by 50% by 2015.

The Resolution contains a page and a half of the grim statistics justifying the demand for priority action and specifically notes the enormous under funding of lung cancer research, which receives only seven cents for every federal dollar spent on breast cancer.

Of course we would like to see a cure for breast cancer as we would for all cancers. Thanks to the billions in federal dollars alone that have been invested in breast cancer research and early detection, the 5-year survival rate for breast cancer is now 88%.

Having been massively under-funded, as the resolution notes, lung cancer’s 5-year survival rate is still only 15%. That will no longer be tolerated.

We are not asking for a cure at this point. Just a 50% reduction in the mortality rate for lung cancer, the most lethal cancer, which is now killing more men and women each year than breast, prostate, colon, kidney, melanoma and liver cancers combined.

One in five women being diagnosed with lung cancer now have never smoked at all and they seem to be getting diagnosed younger. Why aren’t women demanding more research? Because they do not know the facts.

You spell out the facts so eloquently in S. Res. 87 and you lay out in the resolution a comprehensive program for lung cancer that is actually quite similar to the one you proposed yesterday for breast cancer.

When will you announce your comprehensive plan for lung cancer? We thank you and look forward to hearing from you on behalf of all those with and at risk for lung cancer, their families, caregivers and friends.

Lung Cancer Alliance

To contact Clinton’s office:

Hillary Clinton General Campaign Headquarters

4420 North Fairfax Drive

Arlington, VA 22203

Ph: 703.469.2008

Fax: 703.962.8600

comments@hillaryclinton.com

press@hillaryclinton.com

Exploring Alternatives

After being diagnosed with mesothelioma at age 48, and exploring traditional options and undergoing four rounds of chemotherapy, Charlene Kaforey was looking for alternatives. Her physicians had earlier recommended a pleurectomy or pneumonectomy, which would remove part or all of the affected lung. That option was still on the table following chemo.

But after doing extensive research, Charlene was concerned about quality of life after such a procedure. Diagnosed as Stage III, she knew that only 25 percent of patients at her status survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Currently, I don’t have a lot of symptoms,” she says. “I thought, why, if I feel good, do I want to end that by having the surgery and possibly never feeling good again?

“When I was at the hospital, I looked around the waiting room and saw everyone in wheelchairs, or hooked up to oxygen. I actually started crying. People don’t look good. They don’t look healthy, and they’re struggling. I thought, is this what’s going to happen to me? I didn’t feel a lot of hope.”

During her chemotherapy, from October-December 2007, Charlene researched mesothelioma and its treatments relentlessly. That was when she discovered the ITL Alternative Cancer Treatment Clinic, located in Freeport, Grand Bahama Island.

According to its web site, ITL Cancer Clinic was founded in 2003 and is directed by Dr. John Clement. ITL Cancer Clinic is the operating company for the Immunology Research Centre Ltd., a not-for-profit corporation of the Commonweal of the Bahamas, licensed to treat patients diagnosed with cancer. The Immunology Research Centre was founded in 1977 by Dr. Lawrence Burton, the developer of Immuno-Augmentive Therapy (IAT). The clinic treats all kinds of cancer, including mesothelioma.

Charlene’s daughter, working on a college project about promoting mesothelioma awareness inspired by her mother’s illness, discovered a web site with a link to the clinic. Charlene contacted the organization on whose site she found the link, to find out if they knew anyone who had been treated there. Initially, the answer was no. But two weeks later, they called her back and put her in touch with an ITL patient.

“I talked to her and she’s 6 years out,” Charlene said, which means the patient has survived six years after diagnosis. “She has it in both lungs and here she is, traveling and living life.”

Encourged, Charlene contacted the ITL Clinic directly for more information. Staff reviewed her medical history to see if she would be a candidate for treatment at ITL, and put her in touch with other mesothelioma patients being treated there.

“I’m skeptical by nature,” Charlene says. “It’s so out of the ordinary, but when I was talking to people out 6 years and feeling good compared to others who did more traditional treatments, some of whom didn’t make it very long, or life was hard, and it seemed like a good option for me.”

Friends and family initially resisted the idea, feeling that she should take the more traditional path, including surgery.

“People thought I was crazy at first. They had read all the literature [from traditional treatment facilities] and felt that I needed to do the surgery,” Charlene says. “Do I know for certain this will work? No. But I just don’t think the statistics support my having a good quality of life or a good chance of survival with surgery and traditional methods. So I’m going to do it.”

Next: The ITL Experience

As I mentioned earlier this week, I spent the past weekend in Detroit, Michigan, at the 4^th Annual Asbestos Awareness Day Conference, presented by the Asbestos Disease Awareness Organization (ADAO).

The conference was held at the Barbara Ann Karmanos Cancer Institute, which is the location of the National Center for Vermiculite and Asbestos-Related Cancers, co-directed by Dr. Michael Harbut and Dr. John Ruckdeschel, both of whom spoke at the ADAO conference.

While it might seem obvious, Dr. Harbut said, a key to diagnosing and treating asbestos disease is an emphasis on a medical approach.

Dr. Harbut explained that the Karmanos program “approaches asbestos disease from a purely medical standpoint, which includes taking into account any risk factors, employing state-of-the-art scanning equipment and a multidisciplinary, research-driven approach to early detection and treatment. This includes consideration of non-mailgnant or sub-clinical asbestos disease.

“Diseases that are ‘not hurting you yet,’” he said.

Focus areas at the National Center for Vermiculite and Asbestos-Related Cancers include the establishment of a schema for high resolution CT (HRCT) classification, measurement of pleural plaque volume, examination of psycho-social aspects of asbestos disease, testing new treatments including osteopontin and SMRP, and compiling a comprehensive database of disease, diagnosis and treatment.

The Center encourages anyone at risk from asbestos exposure to seek testing for early detection.

Dr. Ruckdeschel said barriers to successful asbestos disease treatment include a sense of nihilism in the medical community, the idea of giving up on the patient when mesothelioma is diagnosed due to its traditionally high mortality rate. There is a sense of providing only “quick fix” supportive care, he said.

Other challenges include a lack of treatment centers with a documented track record, lack of large standardized treatment trials, and a paucity of research investment, Dr. Ruckdeschel said.

The Center predicts an epidemic of vermiculite and asbestos-related cancers in the near future, as the latency period of asbestos disease exposure is reached, and as asbestos exposure spreads around the world, particularly in third-world countries.

“One life lost to asbestos disease is tragic. Hundreds of thousands of lives lost is unconscionable,” Dr. Ruckdeschel said.

For more information, visit the Karmanos Cancer Institute online or call 1-800-KARMANOS.

Charlene’s Fight

When Charlene Kaforey, 48, was diagnosed with pleural mesothelioma in July 2007, she immediately began seeking out information and treatment options.

The prognosis for mesothelioma is still bleak. There is no cure, and most studies estimate survival time between 4-12 months, depending on the stage of presentation. Charlene’s mesothelioma was diagnosed relatively early, so she was hopeful.

She visited mesothelioma specialist Dr. David J. Sugarbaker at Brigham & Women’s Hospital in Boston, Mass., Dr. Valerie W. Rusch at Memorial Sloan Kettering Cancer Center in New York, and Dr. Harvey Pass at the NYU Cancer Institute.

Immediately, doctors talked about extrapleural pneumonectomy, a surgery to remove the entire lung, entire diaphragm, and the lining of the chest cavity and the heart. Surgery would be followed by 6 weeks of radiation, and possibly chemotherapy. One doctor even talked about performing a heated chemotherapy wash of the chest cavity while on the operating table. At that time, they believed Charlene was a stage I, and such surgeries could give her a 40 percent chance of a 5 year survival. One doctor mentioned getting her as much as 10 years.

One of the doctors talked about limiting the surgery to a pleurectomy/decortication, a technique to remove the parietal pleura from the lung. The median survival after pleurectomy for malignant mesothelioma ranges from 6-21 months, and 9-40 percent of patients survive up to 2 years. However in later stages, the survival rates are almost identical between the two surgeries.

Research is still unclear as to whether extra-pleural pneumonectomy provides significantly greater benefits than pleurectomy, and if either is significantly more effective than non-surgical options.

Charlene didn’t have a lot of tumor bulk, so she was sent for a mediastinoscopy, a biopsy surgery that allows doctors to view the middle of the chest cavity and to remove lymph nodes from between the lungs to test them for cancer or infection. They found that Charlene did have lymph node involvement.

“I went from a Stage I to Stage III overnight,” she says. “It was shocking.”

Because of the lymph node involvement, doctors recommended she postpone considering pleurectomy or pneumonectomy and undergo chemotherapy. Survival rates from either surgery for a Stage III patient is much less, and only 25 percent survive 20 months, with less than 10 percent surviving 5 years. Both surgeries involve significant mortality rates and require 6-9 months recovery time.

“Looking at it now, I feel in some ways that having the lymph node involvement was a godsend for me,” Charlene says. “I mean, my condition was more serious, but because I was doing the chemotherapy, it gave me time to look for more information and to really think more about my options. Otherwise, I would have rushed into a very serious surgery with a long, difficult recovery and I’d probably be without a lung and diaphragm right now.”

Charlene offers one word of caution to meso patients.

“While you may feel time is of the essence, don’t rush into a procedure until you really understand what is involved, and what benefits you can expect to receive, what the risks and complications are, how long and difficult the recovery will be,”she said.

She talked to other meso patients and read everything she could get her hands on. Quality of remaining life is a big issue to consider.

“I realized that I might have only 18 to 30 months maximum to live, and that I would spend at least 9 months in a brutal recovery. I was feeling good with little to no symptoms. I couldn’t justify giving up my good health to surgery, knowing I may never feel good again, and might have only another 9 months of poor quality life after recovering from the surgery,” Charlene says.

Next: Charlene explores alternative medicine

According to a study of U.S. Government Death Data, compiled by the EWG Action fund, Alabama ranks 19th in the U.S. for cases of asbestos related disease (asbestosis) and mesothelioma.

• At least 741 people have been killed by asbestos since 1979 in Alabama.

• 10,881 people have sought justice in Alabama.

• At least 75 shipments (3,624 tons) of vermiculite went from Libby, MT to 4 locations in Alabama between 1948 and 1993.

About the Map

The dots on this map represent individuals who have died from two signature asbestos diseases, mesothelioma and asbestosis, as confirmed by death certificate records. To protect the identity of the victims, the dots on the map have been randomly placed within the county where the death was recorded.

The map includes just a small portion of all asbestos-related mortality that occurred during the time period analyzed. It does not include a single lung cancer death caused by asbestos, although national estimates of lung cancer mortality from asbestos range from 5,000 to 10,000 per year during that time.

The data also grossly underestimate mesothelioma mortality, the signature asbestos-caused cancer. This is in part due to under-diagnosis of the disease, but in greater measure because mesothelioma was not tracked by the federal government as a cause of death until 1999. Prior to that, scientists estimated mesothelioma mortality by assuming cancers of certain sites (for example, the pleura) were mesothelioma. This resulted in dramatic underestimates of the true mortality rates. When the government began tracking mesothelioma as a cause of death, mortality more than doubled, from 935 in 1998, to 2343 in 1999.

The map also does not include asbestos mortality from gastrointestinal (GI) cancer. The link between asbestos and GI cancer is contested by industry and its insurance companies, but OSHA and the World Health Organization International Agency for Research on Cancer all have concluded that asbestos does cause some types of GI cancer (OSHA 1994, WHO 1989). The best national estimates are about 1,200 asbestos-caused gastrointestinal cancers per year.

If the data presented above are corrected to include lung and gastrointestinal cancer and more accurate estimates of mesothelioma incidence, nationwide, the total mortality from asbestos from 1979 through 2001 would be about 230,000 people.

For more information about Asbestos in Alabama, visit the EWG report online.

The Lung Cancer Alliance (LCA) announced Feb. 25 that statistics recently released by the American Cancer Society (ACS) indicate that lung cancer continues to kill more people each year than all the other major cancers combined.

Beginning in 2003, ACS started using the 2000 census for its age adjusted statistical analysis. Since that time, the incidence rate for lung cancer in men rose from 86 new cases per every 100,000 of population to 89, and incidence rates for women went from 51.4 to 55.2.

The LCA points out that in research dollars per death, lung cancer is receiving a fraction of the amounts given to breast, prostate and colon cancers.

The five-year survival rate for breast cancer now stands at 88 percent, prostate cancer 99 percent and colon cancer 65 percent, while lung cancer remains at 15 percent.

The ACS credits screening as a major component in achieving high survival rates. So, part of the problem, according to an article published in the Baltimore Sun Feb. 27, is that there is not yet any effective way to screen for lung cancer.

Reporter Stephanie Desmon found that neither physicians nor major medical societies advocate lung cancer screening at this time, because no one has proved that it saves lives.

Studies have shown that screenings find more cancer, but also more lesions and nodules that may or may not be cancer, Desmon’s report said. This leads to confusion about how to treat these spots, or whether to treat them at all. There also are concerns that lung screenings may lead to further tests, biopsies and surgeries, some of which may be unnecessary or harmful to a patient. Scans that produce “watch and see” results also lead to fear and anxiety, and emotional cost to the patient.

In 2002, the National Cancer Institute launched the National Lung Screening Trial (NLST), which will compare two ways of detecting lung cancer – spiral computed tomography (CT) and the standard chest X-ray. By Feb. 2004, nearly 50,000 people (smokers or former smokers) had joined NLST at more than 30 study sites across the country.

The trial (now closed to further enrollment) is slated to collect and analyze data for eight years to examine the risks and benefits of each type of screening. The NLST is a randomized, controlled study and is large enough to determine if there is a 20 percent or greater drop in lung cancer mortality from using spiral CT compared to chest X-ray. The trial is scheduled to last until 2009.

A report published recently by the Environmental Working Group (EWG) provides startling and frightening information about the state of asbestos-related disease in the United States today, and its potential for future health issues. A study of official government data reveals an epidemic of asbestos-caused diseases in the United States that claims the life of one out of every 125 American men who die over the age of 50.

Ten thousand Americans die each year – a rate approaching 30 deaths per day – from diseases caused by asbestos, according to a detailed analysis of government mortality records and epidemiological studies by the EWG Action Fund. Asbestos kills thousands more people than skin cancer each year, and nearly the number that are slain in assults with firearms, they found.

Another scary statistic shows that mesothelioma was not tracked as a cause of death by federal health officials until 1999. Prior to that time, the National Center for Health Statistics (NCHS) and National Institute for Occupational Safety and Health (NIOSH) tried to estimate the number of deaths due to malignant mesothelioma by using surrogate measures with tumors related to mesotheliomas.

The report states that scientists now know that estimates of mesothelioma based on surrogate indicators dramatically underestimated the number of deaths due to mesothelioma. The EWG Action Fund found the first year that federal officials began tracking mesothelioma as a distinct cause of death, official mortality more than doubled! In 1998, the last year surrogate indicators were used, the estimated number of mesothelioma deaths was 935. One year later, when malignant mesothelioma was specifically coded as a cause of death, the number of deaths was 2,343.

The EWG also estimates that we may not see the peak in U.S. asbestos disease for another 10 years or more.There was widespread use of asbestos in the United States by the mid-1970s. The EWG estimates that more than 3,000 consumer and industrial products on the market at that time contained asbestos; asbestos product factories were polluting nearby neighborhoods; asbestos workers were heavily exposed on the job and were bringing home substantial amounts of asbestos dust to their wives and children; and asbestos was commonly used in public buildings and workplaces for soundproofing, fireproofing, and insulation.

Awareness of the dangers of asbestos to health didn’t develop until the beginning of the 1980s, and safety measures weren’t implemented across the board even then. Asbestos is still not totally banned today. The EWG points out that it remains heavily used in brake shoes and other products, and millions of people are exposed at home or in their workplace by the monumental quantities of asbestos that remain in the built environment — the attic insulation in 30 million American homes, for instance — following decades of heavy use.Asbestos diseases have a 20 to 50 year latency period, meaning that a substantial portion of individuals exposed in the 1960s and 1970s are just now showing up as disease or mortality statistics.

The magnitude of this public health crisis raises profound questions about the wisdom and fairness of doing anything to cut off any avenue that might provide assistance or protection to the tens of thousands of Americans who become sick and die from asbestos exposure.For more information, visit http://www.reports.ewg.org or http://www.ewg.org.