Why do People Contract Mesothelioma?

laurie_kazan-allenBy Laurie Kazan-Allen

Mesothelioma is an avoidable disease. If governments had first acted when the asbestos hazard was known, the incidence of this deadly cancer would, by now, be much lower. And yet, despite the evidence documenting the deadly consequences of asbestos exposure, governments turned a blind eye to an industrial sector which was generating thousands of jobs, huge revenue streams and generous political contributions. In some countries, they still do. It is truly staggering to think that since 1920, 194 million tonnes have been used worldwide.

In February 2012, a landmark verdict handed down by an Italian Court found executives guilty for their roles in the asbestos deaths of thousands of Italian citizens; the defendants were sentenced to 16 years in prison and fined millions of euros. This was the first time that corporate decision makers had been held to account for such crimes. In November 2012, French Judge Marie-Odile Bertella-Geffroy arrested Martine Aubry, a senior official in the French Ministry of Social Affairs, over asbestos allegations. The Magistrate, whose caseload focuses on health-related issues, has charged Aubry with “involuntary manslaughter and causing bodily harm by negligence” due to the government’s failure to implement a 1983 European Union directive designed to improve the safety of asbestos workers. Two other officials are being investigated by the Judge as are asbestos industry personnel.

It is long past time for us to ask why asbestos was used despite all that was known and who made the decisions which allowed the lives of so many innocent people to be jeopardized.  People, especially those whose lives have been impacted by mesothelioma, deserve to know what dynamics were at work that created the climate in which the use of asbestos flourished. The French Magistrate is right to question politicians and civil servants as well as asbestos lobbyists and executives. We would do well to follow her example.

About Laurie Kazan-Allen

Ms. Laurie Kazan-Allen has been researching, writing and campaigning on asbestos issues for more than twenty years. The British Asbestos Newsletter, the quarterly publication she founded in 1990, is widely regarded as one of the most authoritative contemporary sources of information by the UK community of asbestos activists. In collaboration with international colleagues, in 1999 she established The International Ban Asbestos Secretariat (IBAS). As the IBAS Coordinator she has organized and/or participated in asbestos events on six continents, amongst the most recent of which was an asbestos hearing at the European Parliament.

As an adviser to the UK All Party Parliamentary Asbestos Sub-Group, Ms. Kazan-Allen helps organize the annual Parliamentary asbestos seminar. Kazan-Allen has written prolifically about asbestos issues in 85+ issues of the British Asbestos Newsletter and in IBAS publications such as Eternit and the Great Asbestos Trial, Report on the Asian Asbestos Conference 2009, India’s Asbestos Time Bomb and Killing the Future – Asbestos Use in Asia. These and other texts can be accessed on the websites: www.britishasbestosnewsletter.org and www.ibasecretariat.org

On March 25, 2012, Ms. Kazan-Allen became the first non-Australian to receive the prestigious Emeritus Professor Eric G. Saint Memorial Award at a ceremony held in Perth, Western Australia.

Coping with the Holidays

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

pumpkinThe approaching holiday season can add to the stress experienced by those affected by mesothelioma.  Following a mesothelioma diagnosis in the family, the holiday today will usually not be the same as it was in years past. Acknowledging that, making adjustments, and being flexible to accommodate the new needs of your family can help ease some of the stress.

The first thing I would suggest is that you spend some time thinking about what a particular holiday means to you. Let’s start with Thanksgiving.  We often put more weight on what we place on the table and how large the event is rather than focusing on the reason for the celebration – in this case, giving thanks for what we have. So, for example, this might be the year when you choose to not participate in a large gathering but a quiet and intimate dinner where you spend the time in reflection on what you do have in your life to be grateful for. The patients often tell me they are grateful for their caregivers, the caregivers are grateful that their loved one is with them on this holiday, and those of you who have lost a loved one are grateful for the sweet times they had in the past and for the family and friends who have supported them during this difficult time.

This holiday season you get to set the tone and do what works for you! If you find it difficult to participate in your traditional celebration, perhaps you may need to carve out quiet time during which you can regroup. Or perhaps join your friends and family for a portion of the holiday – visit them for an appetizer and drinks or swing by for dessert. If you plan on being home and find yourself pressed for time or too distracted to cook – order in. No one is going to judge you for being kind to yourself. Rest and pace yourself. The burden of stress is heavier and the coping more difficult when you’re tired.

And don’t forget to take the time now to discuss with family members what their expectations for the holiday are. If you opt for a traditional celebration of the holiday and your loved ones offer to help, do take them up on their offer. Or if you choose to skip this year’s family traditions but don’t want to give up the holiday entirely, volunteering at a community event will allow you to be festive while not having to maintain a steady focus on yourself.

Finally, if you are having difficulty coping you may wish to join us for one of our support calls or participate in one of our online groups. Sometimes it helps to talk to others going through similar experiences as you. If you’re interested, but aren’t currently signed up for these groups, please call me (703.879.3820) or email me at mary@curemeso.org right away. Signing up doesn’t mean you have to participate. It simply means that you will start receiving reminders and call-in information, and you can then choose, on your own time, if you are ready/willing to join the call.

And if for you the worst is over, and you’d like to now pay it forward, let me know if you would like to volunteer to be our “on-call” community support for the holidays.  Peer to peer support and effective strategies that you have discovered during your journey can be invaluable to other members of the meso community.

What’s Next – What Last Week’s Election Means for Mesothelioma Research

cap_hill_blogMany of you may be wondering what the results of last week’s election will mean for mesothelioma research. Overall, medical research funding has fared well under the Obama administration, with the National Institutes of Health (NIH) receiving level funding over the past four years. With inflation, this actually means there were small cuts each year, but given the economy, it is fair to say it has fared well.

In an interview given to Research!America, a research advocacy group based in the DC area, President Obama gave the following response when asked about his plans for investing in research through the NIH:

I believe that by maintaining and growing our support for key basic research we are strengthening our communities; this is why I have made a commitment to double our investment in scientific research over the next 10 years. Even in these difficult funding times, I have fought to support funding for the National Institutes of Health.[i]

In 2011, the NIH funded 23 mesothelioma grants. The NIH houses the National Cancer Institute (NCI), on which many meso warriors depend for access to clinical trials. Access to clinical trials is imperative for the meso community given  the current existence of only one, marginally effective, FDA approved mesothelioma treatment (Alimta).

On the other hand, the Centers for Disease Control and Prevention (CDC) took a deep cut in fiscal year 2011, which has not been recovered. The CDC funds the National Mesothelioma Virtual Bank (NMVB)[ii], an essential resource for mesothelioma researchers that allows them to access virtual mesothelioma tissue samples. The NMVB is run by Mesothelioma Applied Research Foundation’s board member Michael Becich, MD, PhD. Funding for the CDC is crucial to the survival of the NVMB. In the same interview, President Obama states:

The work at the Centers for Disease Control and Prevention is critical for our mission to preserve and protect health and safety of our citizens. My most recent budget provides $11.3 billion for CDC and the Agency for Toxic Substances and Disease Registry, a significant increase.

Most immediately, the President is under pressure to take the lead on avoiding the fiscal cliff, as mandated in the Budget Control Act of 2011, set to occur January 2, 2013 if Congress does not act to pass a budget before the end of the year. The Meso Foundation estimates that this fiscal cliff, also known as a sequester, would result in the cut of two mesothelioma research grants in 2013.[iii]  Washington pundits believe that this win will embolden the President to push a new plan of his own that includes targeted cuts and increases in tax revenue. The targeted cuts, as opposed to the across the board cuts mandated by the sequester, would likely protect NIH and CDC funding and that is good news for mesothelioma research funding.

The Meso Foundation will continue to monitor what happens in the coming Congressional “Lame Duck” session.  Stay tuned!


[i] Accessed on the Research!America website November 8, 2012 http://www.yourcandidatesyourhealth.org/profile.php?c_id=NTUwMA%3D%3D

[ii] Learn more about the NMVB:  http://www.mesotissue.org/

[iii] Read more about the fiscal cliff on our blog:  http://curemeso.wordpress.com/2012/09/17/sequestration-to-cause-cuts-of-two-federally-funded-mesothelioma-research-grants/

Veterans and Mesothelioma

flags_veterans3On November 11, we observe Veterans Day and recognize the courage and sacrifice of our service men and women who protect our freedoms.

On this day, we must also recognize the great tragedy that is the exposure to asbestos that our nation’s heroes have endured. We can not only document the asbestos exposures over the course of the twentieth century, but we have evidence that one-third of American mesothelioma patients were exposed while serving their country or working as civilians aboard Navy ships or in shipyards.

Asbestos exposure among Navy personnel was widespread from the 1930s through the 1980s, and exposure to asbestos still occurred after the 1980s during ship repair, overhaul, and decommissioning. Unlike popular belief, we have not yet seen the end of exposures to asbestos. In fact, asbestos exposures have been reported among the troops in Iraq and Afghanistan and soldiers in wars that extend into third world countries, where asbestos use is increasing without stringent regulations, may also be at risk. These facts are troublesome because we now know that even low-dose, incidental exposures, can cause mesothelioma.

For all those who will develop mesothelioma as a result of these past or ongoing exposures, the only hope is development of better treatments. Currently, there is no cure for this disease and treatments available today are few and marginally effective.

The Mesothelioma Applied Research Foundation (Meso Foundation) seeks to change this landscape to make sure that patients of today and those of tomorrow have treatments available to them. To do so, it focuses on funding mesothelioma research, providing education and support services, and advocating for a larger federal investment into mesothelioma research. To date, the Meso Foundation itself has funded over $7.6 million in research.

In addition, the Meso Foundation has successfully advocated the inclusion of mesothelioma to the list of diseases eligible to receive funding from the Congressionally Directed Medical Research Program, administered through the Department of Defense. Each spring the Foundation testifies before Congress, mobilizes the community to advocate, and makes multiple in-person visits on Capitol Hill to ensure that mesothelioma researchers are eligible to apply for this crucial funding. To date, the program has funded $8.8 million in funding for mesothelioma research. The Foundation has also nominated meso warriors to serve as peer reviewers during the grant making process each year to ensure that the patient voice is heard.

The video below displays meso warrior and Navy veteran, Mike Clements, as he shares his story for Capitol Hill staffers in a 2011 breifing:

[youtube http://www.youtube.com/watch?v=6KQFQ5A0dLA]

To learn more about the CDMRP and meso warrior Julie Gundlach’s experience as a peer reviewer for the grants, view this session form our 2012 Symposium:

[youtube http://www.youtube.com/watch?v=7MftRsIaTR0]

This is the Meso Foundation’s executive director Mary Hesdorffer, Nurse Practitioner, testifying before the Senate Appropriations Committee:

[youtube http://www.youtube.com/watch?v=Vk2FeuIEwjc]

View here all of the grants funded by the CDMRP to date.

Mesothelioma and the 2012 Election

IVotedThis is a very important year to vote! Not only do we have the Presidential election but every seat in the House of Representatives is up for grabs this year.  Do you know who will get your vote?

Mesothelioma has repeatedly been overlooked in medical research, and the mesothelioma community has rallied to ensure funding for meso research. Without research, there is no hope for the development of better treatments and A CURE. There is currently only one FDA approved treatment for mesothelioma that extends life by only 3 months. Take a few moments to educate yourself on the candidates and see where they stand on medical research:

  • See how Presidential nominees Barack Obama and Mitt Romney responded to questions posed to them about Cancer policy issues on the Cancer Votes website:

http://www.cancervotes.org/pguide/US/p/?utm_source=national_email&utm_medium=email&utm_campaign=Cancer_votes

  • CancerVotes.org also posed questions to candidates for Congress.  Visit their website and choose your state to see if your candidates responded:

http://www.cancervotes.org

  • Research!America also asked candidates to complete a brief survey on health and research, see what your candidates had to say:

http://www.yourcandidatesyourhealth.org/candidates.php

Exercise your right to vote!  It does make a difference.  We will be sure to give you opportunities to educate your elected officials on mesothelioma in 2013.