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!

I hope everyone had the chance to watch John Atkinson play the U.S. Open golf course at Torrey Pines, California, as part of a celebrity foursome with NBC Today Show anchor Matt Lauer, Dallas Cowboy player Tony Romo and entertainer Justin Timberlake. The event was broadcast on NBC Sports on Sunday, Father’s Day.

I’ve posted about John several times on this site. He was selected by the readers of Golf Digest magazine to participate in this first-ever celebrity foursome event. Diagnosed with Stage IV lung cancer, John used the event as a chance to raise awareness about lung cancer and to inspire those with the diagnosis to keep meeting the challenges of everyday life, and taking advantage of life’s unique opportunities.

This morning, Matt Lauer interviewed John and his brother, Kevin, who caddied for his big brother on the last hole in an emotional show of support. Watch the video at MSNBC.com.

In addition to this video, the Lung Cancer Alliance has the first part of what will be a multi-part documentary about John’s battle against Lung Cancer up on its site. John is a spokesperson for the organization. Watch the first episode at the LCA web site.

John has made it his mission to raise awareness about lung cancer, with the hopes of increasing funding for research and treatment. His campaign gives hope to everyone who battles lung cancer in its many forms, including those fighting mesothelioma, which affects the lining of the lungs. Thank you, John, for your willingness to go that extra mile!

Just a quick update on John Atkinson. I’ve posted many times this week about the lung cancer survivor, who will play in a celebrity foursome on the U.S. Open Torrey Pines course in California with entertainer Justin Timberlake, NBC Today Show anchor Matt Lauer, and Dallas Cowboys star Tony Romo. John’s round of golf will be televised on NBC Sports at 2 p.m. EDT on Sunday, June 15. But I need to clarify that John is actually playing his round TODAY, Friday, June 6.

He arrived in California yesterday for a practice round, and will tee off with the celebrities in front of 250 spectators, along with camera crews and journalists, tomorrow. His final round and his score will be televised on June 15 as part of the lead-in to the U.S. Open coverage. The special will feature clips from the 18 holes of golf. John vows to break 100 on the tough course, with a goal of shooting an 89.

You can still sign up to sponsor John as part of his U.S. Open adventure, with funds going to lung cancer research and awareness. He is encouraging people to agree to double their pledge if he makes his goal of breaking 100. Find a sponsor form at the Lung Cancer Alliance web site. GO JOHN!

Lung cancer survivor John Atkinson, who I mentioned yesterday, continues to be in the news. Selected by Golf Digest magazine to play as part of a celebrity foursome on the U.S. Open course on Father’s Day, June 15, he is using this opportunity to speak out about lung cancer awareness and research. Of course, mesothelioma is a type of lung cancer caused by asbestos, and affects the lining of the lungs.

Today there was a great article in the Detroit Free Press about Atkinson. The article states that Atkinson considers his “Achilles heel” in the competition to be the fact that he’s never played the tough Torrey Pines U.S. Open course, not that he has lung cancer. The avid golfer was on the links shortly after his diagnosis (he shot a 78) and walked the course after completing four rounds of chemotherapy. His goal for the celebrity tournament is to break 100.

You can also keep an eye out for Atkinson on NBC Nightly News tomorrow, June 5. He is scheduled to appear, barring any unexpected national events that bump him from the slot.

Atkinson will be teamed with celebrities Justin Timberlake, NBC Today Show anchor Matt Lauer, and Dallas Cowboy star Tony Romo in the tournment, which will be aired on NBC Sports at 2 p.m. ET June 15.

How wonderful that Atkinson has this chance in the spotlight to talk about lung cancer, and to promote efforts to increase funding for research and to raise awareness. He also is an official spokesman for the Lung Cancer Alliance.

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

Last week I helped spread the word that Lung Cancer Alliance advocate John Atkinson has been selected by Golf Digest magazine to play the U.S. Open golf course, on Father’s Day, June 15, as part of a celebrity foursome with NBC Today Show’s Matt Lauer, entertainer Justin Timberlake, and NFL star Tony Romo. He plans to use the opportunity to advocate for lung cancer awareness and research. NBC Sports will broadcast the celebrity event from 2-3 p.m. ET, where John hopes to break 100 on the tough Torrey Pines course.

John was diagnosed with stage IV lung cancer a little more than a year ago at age 38. He was selected from among 56,000 people who entered a contest sponsored by Golf Digest, the United States Golf Association and NBC Sports to play the U.S. Open Course as part of the celebrity team. You can read more of his inspiring story at Golf Digest online.

In addition to raising awareness, John and the Lung Cancer Alliance would like to use this event as an opportunity to raise funds for lung cancer research. They are encouraging people to make a donation or pledge to LCA in John’s honor. There’s even a great idea for a “game day” event, where lung cancer awareness supporters can collect pledges and host a pledge party with family and friends. John is urging donors to consider doubling their pledge amount if he breaks 100!

Visit the Lung Cancer Alliance U.S. Open pledge page for donation information, pledge party forms, and links for help and more information.

What a GREAT opportunity to raise the profile of lung cancer awareness, and communicate to America - and beyond - what an important issue this is for national health! Watch for John in the coming weeks, as he is scheduled to appear on national news programs like NBC Nightly News, The Today Show and The Tonight Show. I’ll try to update when his appearances are scheduled.

Amy Peterson of the Lung Cancer Alliance posted to the LCA message board / support group on Inspire.com yesterday to let cancer survivors know about a new program that aims to provide hope and cheer during a difficult time. The LCA is partnering with Compassionate Communications, a company dedicated to connecting people in need of support and encouragement with people who want to reach out to them.

Compassionate Communications will operate a web site, which will be launched sometime this month, that will feature photos and information about people struggling with cancer, including mesothelioma, and other life-threatening illnesses. Visitors to the site can view profiles, and if they choose to register (for a fee of $25), they will receive five Hallmark greeting cards with pre-paid postage, to send to patients to encourage them, and other support materials. Twenty-five percent of the registration fee will benefit patient-serving organizations.

There is no charge for a patient to register his or her profile. The program operates in cooperation with Hallmark Business Expressions (a subsidiary of Hallmark Cards, Inc.).

Patients may download an “opt-in” registration form and waiver directly from the web site, or call 888-337-6416. The waiver must be completed and returned by mail or fax to Compassionate Communications, which will then provide participants with an account so they can set up their personal profile on the site. There is a place on the waiver form for patients to designate the patient-assistance organization they would like card-sender registration fees to benefit.

You may also get more information or ask questions by emailing Amy at the Lung Cancer Alliance at apearson@lungcanceralliance.org.

A while ago, I posted a series of stories from an interview with Rear Adm. Phil Coady (ret.) the Chairman of the Board of the Lung Cancer Alliance. In the interview, he talked about pulmonary fibrosis. Since that time, I’ve had several people wondering if pulmonary fibrosis is connected to asbestos or mesothelioma.

The American Lung Association explains that pulmonary fibrosis is also called interstitial pulmonary fibrosis or interstitial lung disease (ILD). These three terms are often used to describe the same condition.

ILD is not lung cancer; it is a chronic lung disorder. ILD involves a thickening of the lung tissue, which becomes stiff and makes breathing more difficult and demanding. ILD can take many forms, and may progress slowly or rapidly, depending on the individual and the nature of the ILD.

The Lung Association reports that the common link in ILD is that it begins with inflammation, which may affect different parts of the lung. Inflammation may lead to permanent scarring of the lung tissue, which is often called pulmonary fibrosis. The interstitum is the tissue between the lung’s air sacs. Scarring begins in this area, which lends the condition its formal name.

Known causes of pulmonary fibrosis include occupational and environmental exposures, including exposure to asbestos, which can damage the lungs and cause scarring (fibrosis).

Other possible causes include a disease called Sarcoidosis, side effects of medication, radiation, connective tissue or collagen diseases, or genetic predisposition, which is not as common. The familial form of the disease is often called familial idiopathic (of unknown origin) pulmonary fibrosis.

When I spoke with Admiral Coady, he mentioned that he did have a family history of pulmonary fibrosis. He knew that his family history, combined with his exposure to asbestos while serving in the Navy, put him at greater risk for the disease, and was vigilant about early screening. He did eventually develop the condition. Sadly, he also later developed lung cancer, although not mesothelioma.

Some ILD improves with medication if treated when inflammation occurs, and some people also need oxygen therapy as part of their treatment.

I hope this answers the questions and clears up any confusion. While pulmonary fibrosis is not related to mesothelioma, it could be considered an asbestos-related disease.

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.