Review: Report on Mesothelioma

mapby Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Researchers from Creighton University School of Medicine accessed the National Cancer Database (NCD), and issued a report on their findings. They analyzed the years between 2000 and 2010. In the United States, 26,605 patients were diagnosed during this period of time. The NCD accumulates this data on approximately 70% of all cancers diagnosed in the states. If one were to add in the 30% not recorded it would take us close to the number of 3,458 cases per year that we use as a figure when we present on mesothelioma.  This supports that the numbers of diagnosed mesothelioma patients have remained fairly steady over these past years.

Not surprising were the reports that mesothelioma patients were 89% Caucasian, 78% male and 60% over the age of 70. We talk about the changing face of mesothelioma, but perhaps that perception is created because younger patients access the web, engage in social media and are able to draw more attention to their plight. Or perhaps one could argue that when 30% remain unaccounted for in this database the figures could be different in terms of age, race and gender.

Recently, I took the opportunity to speak with Dr. Karen Antman, Dean of Boston University School of Medicine, to discuss the earliest days of mesothelioma research. Dr. Antman, prior to writing one of the first clinical trials in mesothelioma, canvased the database of the Harvard system and told me that even then she was surprised by the number of young patients she found in the archives. So perhaps this phenomenon is not new.

What does not surprise me is that 36% of patients under the age of 50 underwent surgery, and 12% over the age of 80 also underwent a surgical procedure. It takes a good physicality to undergo this surgery and return to a quality of life that is sustainable and acceptable to the majority of patients.

In reading the report, what did not surprise but disgusted me, was that insurance weighed so heavily in the surgical arena. “Patients with private insurance received more surgical treatment (28%) than patients with Medicaid (22%), Medicare (18%), and VHA (12%)(p<0.009)” (J Clin Oncol 31, 2013 (suppl; abstr e18501). Our Veterans seem to be denied surgery when compared to those with private insurance.  21% of all patients in this database underwent surgery which explains why attempting to mount a robust surgical trial in mesothelioma will not be possible and we will continue to rely on case series and small powered trials to obtain surgical statistics in advising our patients.

Want to learn more about mesothelioma research? Ask one of our experts.

Mesothelioma Included in Department of Defense Spending Bill

cdmrp_logoEarlier this month, the House Appropriations Committee passed the FY2014 Defense Appropriations Bill, which included mesothelioma as a topic area in their Peer Reviewed Cancer Research Program for the third year.  Mesothelioma researchers will be eligible to apply for $15 million in research funding.

Mesothelioma has been included on the list of diseases eligible to receive funding through the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) since Fiscal Year 2008. The CDMRP has funded a total of $8.9 million in mesothelioma research to date. In Fiscal Years 2008, 2009, and 2010 it was included in the Peer Reviewed Medical Research Program (PRMRP) to compete for $50 million dollars.

In 2011, due to the advocacy of the mesothelioma community, it was moved to the Peer Reviewed Cancer Research Program (PRCRP), to compete with a smaller number of topic areas for $16 million.  In 2012, this sparse amount of funding was decreased to $12.8 million. It returned to $16 million in 2013. The $15 million included in the House Defense Bill is slightly more than a 6% cut from the 2013 amount.

“We are pleased that the advocacy of the mesothelioma community has continued to secure this funding for mesothelioma for the 7th consecutive year,” said the executive director of the Mesothelioma Applied Research Foundation, Mary Hesdorffer, Nurse Practitioner.  “We commend Congress for recognizing the increased risk of developing mesothelioma for our service men and women and continuing to fund this much needed research.”

This bill will next move to the House Floor, and then on to the Senate. The Meso Foundation will continue to follow the appropriations process, so stay tuned for more information.

Oklahoma Tornados: The Continued Threat of Existing Asbestos in Our Homes

asbestos_smallMeso warrior, Liz VanZandt of Oklahoma, is acutely aware of the recent devastation from the tornados in Moore, Oklahoma. “I watched as people were climbing through the rubble in search of loved ones, pets and personal items left behind from the tornado,” she said. As a mesothelioma survivor, her thoughts go immediately to the asbestos that the tornados released into the air. Natural disasters, like the tornados in Moore, disturb existing asbestos-containing materials and they become airborne. We know that any exposure to asbestos can lead to mesothelioma, so anyone present at the site of the tornados is at risk for developing mesothelioma.

Ms. VanZandt knows this firsthand, saying “I wept when the thought came to my mind, long after they rebuild and the cameras are gone, the asbestos that they are in the midst of will most likely make some of them ill. It will be like getting hit all over.”

Unfortunately, these natural disasters and national tragedies (like the September 11th terrorists attacks) will continue to disturb the existing asbestos in our environment for years to come. The Environmental Protection Agency (EPA) estimates that asbestos still exists in 35 million homes in the United States, and that there are asbestos containing materials in most of the nation’s approximately 107,000 primary and secondary schools and 733,000 public and commercial buildings.[i]

The question remains, what will happen to the victims and first responders that are exposed to asbestos now, and develop mesothelioma 10-50 years down the road? The emergency funds provided by the Federal and State governments are not going to be available to them. ”I know the immediate needs have to be met and I am grateful this is being addressed. The long term needs should be acknowledged by our government.”

Unfortunately, even if asbestos were banned today, the existing threat remains. For all those who have been exposed in the past and will be exposed in the future, research to find better treatments and a cure for mesothelioma is the only way to ensure that asbestos becomes less dangerous and deadly.


[i] http://www.epa.gov/region4/air/asbestos/inform.htm Accessed May 30, 2013.

Facebook Exhaustion?

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There are days when all of us wonder what we are doing online so much of our day. Are you feeling vulnerable when reading stories of others who might not be doing well or fearfully comparing your stories to that of others? This is one of the drawbacks of joining an online community. You take the good with the bad and the ugly. So how can you protect yourself on Facebook?

If you are in feeling sad or anxious, perhaps choosing not to log in or only logging in to read your private message may be a good strategy. Or you might consider a Facebook break, and give the groups time to cool down and then jump back in when you are feeling stronger and wish to reconnect with others who are affected by mesothelioma.

There are many who feel the need to share, share and share again, and others who wish to maintain their privacy and participate on a limited basis. Some friend everyone in sight and then get bombarded with messages and feeds, while others judiciously join in and make friends slowly and carefully. Friends can be fleeting on Facebook. You do have the option to “unfriend” someone whose posts are particularly disturbing to you and perhaps send them a simple note as to why you might be unfriending them.

The Foundation is sensitive to the needs of those in the community and wishes to make the Facebook support group experience one that provides accurate information, support and the ability to connect with others.  We will never exploit those in our community and respect your privacy and emotional well-being.  Please contact any staff members with suggestions, comments, or even criticism. That is how we learn how best to care for our community.

Response to the Wall Street Journal Article “For One Asbestos Victim, Justice Is a Moving Target”

McQueensOn Monday, June 17, the Wall Street Journal Published the article “For One Asbestos Victim, Justice Is a Moving Target,” about Bill and Karen McQueen. Bill and Karen have been friends of the Foundation throughout Bill’s diagnosis and treatment, and we were deeply saddened by Bill’s recent passing.

What follows is the response submitted to the Wall Street Journal from the Meso Foundation’s executive director Mary Hesdorffer, Nurse Practitioner.

Words cannot express the suffering that a diagnosis of mesothelioma inflicts upon a family. The McQueen family contacted us early in their struggle and together we researched their best options and provided support and guidance during their journey. The litigation issue is complex, and certainly outside of my area of expertise but I would like to refocus your attention on the lack of effective treatments to stop this disease in its tracks. Mesothelioma is acquired through exposure to asbestos. There is no disputing this. What we do not know is how to prevent this disease, or how to pick it up in its earliest stages when it might be more amendable to treatment. The Mesothelioma Applied Research Foundation (curemeso.org) focuses its energies on funding peer-reviewed research (grants totaling over $8.2 million to date) projects which focus on prevention, early detection, and treatment, as well as basic science, as there is much we have yet to learn about the natural history of mesothelioma. 

The Meso Foundation looks forward to the day when a full ban on asbestos will be inacted by the United States government. However, the Foundation also understands that no law can remove all asbestos from the environment, including asbestos naturally present in the ground, or asbestos present in the attics of over 30 million homes in the United States. Given the long latency period between exposure and disease development, even if a complete ban were inacted today, thousands of Americans would still be at risk for mesothelioma. For all those who have been exposed in the past and will be exposed in the future, research to find better treatments and a cure for mesothelioma is the only way to ensure that asbestos becomes less dangerous and less deadly.”

If you are passionate about raising mesothelioma awareness, join our cause today. Help make a difference in mesothelioma research and treatment by showing your support. Join our cause now.