September 11 and Mesothelioma: Working to Protect Those Exposed to Asbestos from Cancer and Mesothelioma

As September 11 approaches, we all need to take a moment to remember the tragedy of the worst terrorist attack on American soil in our lifetime.  We have not seen the end of the tragedy, as it may also have been the largest isolated release of asbestos in the 21st century.  We expect to see victims and first responders diagnosed with mesothelioma for decades to come due to the mass exposure to asbestos at ground zero.

The National Cancer Institute (NCI) confirms that hundreds of tons of asbestos containing materials were released into atmosphere on September 11, 2001 in the following statement on their website:

Individuals involved in the rescue, recovery, and cleanup at the site of the September 11, 2001, attacks on the World Trade Center (WTC) in New York City are another group at risk of developing an asbestos-related disease. Because asbestos was used in the construction of the North Tower of the WTC, when the building was attacked, hundreds of tons of asbestos were released into the atmosphere. Those at greatest risk include firefighters, police officers, paramedics, construction workers, and volunteers who worked in the rubble at Ground Zero.[1]

Within the past five years, there has been an effort to develop policies to address the repercussions of the September 11th terrorist attacks.

The first legislative action was taken by a bipartisan, bicameral group of New York legislators comprised of the following members:

Senate

Charles E. Schumer (D-NY)

Kirsten Gillibrand (D-NY)

House

Carolyn B. Maloney (D-NY)

Jerrold Nadler (D-NY)

Peter King (D-NY

Charles B. Rangal (D-NY)

Nydia M. Velazquez (D-NY)

Michael G. Grimm (R-NY)

Yvette D. Clarke (D-NY)

This group of New York legislators sponsored the original James Zadroga 9/11 Health and Compensation Act of 2010 (HR 847)[2]:

To amend the Public Health Service Act to extend and improve protections and services to individuals directly impacted by the terrorist attack in New York City on September 11, 2001, and for other purposes.

The first provision of the legislation directed the National Institute of for Occupational Safety and Health (NIOSH) to create the World Trade Center Health Program. This bill was signed into law by the President on January 2, 2011.

The legislation directs the WTC Health program to provide the following:

1) medical monitoring and treatment benefits to eligible emergency responders and recovery and cleanup workers (including those who are federal employees) who responded to the September 11, 2001, terrorist attacks; and

(2) initial health evaluation, monitoring, and treatment benefits to residents and other building occupants and area workers in New York City who were directly impacted and adversely affected by such attacks.

The legislation also includes a provision that enacts a Victims Compensation Fund (VCF) which can be accessed by victims that develop one of the diseases eligible for coverage under the act.  In the original bill, no specific cancers were included in the list of eligible conditions, but instead it directed the Administrator of the program to periodically review available medical evidence to decide whether or not to add a specific cancer to the list. The first review would need to occur within 180 days of the enactment of the law.

In September, 2011, ten years after the deadly attacks, The Lancet[3] published a study that showed an elevated risk of cancer in firefighters exposed to toxins at the World Trade Center (WTC) site.  This was especially troublesome to the mesothelioma community, as mesothelioma is the cancer known to be caused by exposure to asbestos and the National Cancer Institute has confirmed that asbestos was present in one of the WTC towers.

The confirmation of the release of asbestos containing materials by the NCI coupled with the peer-reviewed study indicating that firefighters are at higher risk of developing cancer provides a strong argument that survivors and first responders of the 9/11 terrorist attacks are at an increased risk of developing mesothelioma and other cancers, and thus should be eligible for coverage by the WTC Health Program.

On August 8, 2011, the sponsors wrote to Health and Human Services Secretary Kathleen Sebelius requesting that she act quickly to form the Science/Technical Advisory Committee of the WTC Health Program, as required by the Zadroga Act.

On September 7, 2011, the sponsors filed a petition to John Howard, MD, Director of the National Institute of for Occupational Safety and Health (NIOSH) requesting that NIOSH conduct an immediate review of the new medical evidence presented in the Lancet article demonstrating an “increased cancer rate in firefighters who served at ground zero.”

The Mesothelioma Foundation decided to act as well, and Comments on 911 Inclusion of Cancers (NIOSH Letter Oct 2011).  We sent a letter to John Howard, MD, who is also the Administrator of the WTC Health Program, in October of 2011 urging him to reconsider the requirements for coverage in the WTC Health Program.

In May of 2012, Dr. Howard responded to our request, letting us know that the WTC Health Program Scientific/Technical Advisory Committee (STAC) had discussed the request and recommended that “certain cancers” be added to the List of WTC-Related Health Conditions.  He noted that he was currently reviewing the request.

On June 13, 2012, the Centers for Disease Control and Prevention (CDC) proposed a rule[4] that would add 14 groups of cancer to the List of WTC-Related Health Conditions.  Included in this list was “mesothelioma of the pleura and peritoneum.”  The CDC opened a public comment period on the rule immediately following its proposal, and the and the Mesothelioma Applied Research Foundation acted quickly to submit comments on June 19, 2012 (Comments on 911 Inclusion of Cancers).  The public comment period closed on July 13, 2012.

NIOSH Director and administrator of the WTC Health Program John Howard, MD has yet to make a decision on the final rule.  The reason for the delay is seemingly due to the program’s financial constraints, as the fund is valued at the fixed amount of $2.775 billion.  Once the rule is promulgated, victims and first responders who have developed cancers (including mesothelioma) will not only be eligible for coverage of health care but will also be eligible to apply for financial support through the VCF.

Rumor has it that Senator Kirsten Gillibrand is planning on introducing legislation as early as this fall that would extend the amount of time that eligible individuals can apply for assistance, stay tuned for more information.


[1] http://www.cancer.gov/cancertopics/factsheet/Risk/asbestos

[2] To view the bill, visit www.thomas.gov and search HR 847

[3] To view the article, visit www.thelancet.com and search for “Early assessment of cancer outcomes in New York City firefighters after the 9/11 attacks: an observational cohort study.”  You must register with the website to access the document.

[4] To view the rule in its entirety, please visit www.regulations.gov and search for CDC-2012-0007-0001

Intro to iMig: iMig and the Meso Foundation

What is iMig?

In the next week and a half, you will be hearing a lot about the iMig meeting. This may leave you with a few questions, first one of which probably being “what is iMig?”

The International Mesothelioma Interest Group (iMig) is an independent international group of scientists and clinicians working to understand, cure and prevent mesothelioma. The group was started in 1991 and has since then been the organizer of bi-annual meetings meant to facilitate the sharing and collaboration of researchers and doctors interested in the study of mesothelioma and its potential treatments.

The Mesothelioma Applied Research Foundation and iMig share a productive history. In fact, many Meso Foundation grant recipients and Foundation’s Science Advisory Board members are also members of iMig. For example, the current chair of iMig, Dr. Steven Mutsaers is also an esteemed member of the Meso Foundation’s Science Advisory Board. In 2006, the two organizations hosted a joint meeting in Chicago, IL, and if you’ve ever attended a Meso Foundation Symposium, you may have noticed that many of our speakers are also collaborators of iMig.

iMig 2012 Meeting in Boston, MA

This year, iMig is hosting its bi-annual meeting in Boston, MA, and the Meso Foundation will, once again, be represented. Our own nurse practitioner and executive director, Mary Hesdorffer, MS, APRN, will co-chair a session, while another session will be dedicated entirely to our grant recipients who will present the findings of their Meso Foundation-funded research.

While most iMig members are well-aware of the Foundation’s prestigious peer-reviewed research program and many of them have applied for funding, the Meso Foundation will also take this opportunity to further promote its research program in our effort to obtain the most promising project applications available to speed up treatment development and to ultimately find a cure for mesothelioma.

As the meeting begins on September 11, we will keep you posted on current developments and updates from Boston.

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Kayaking Down the Hudson to Raise Awareness of Mesothelioma

Mark Wells on kayakLast year, Mark Wells organized his first Kayaking for a Cure Event, and kayaked down the Hudson River with two other people: meso survivor Patti Turi and a friend of hers.  Mark decided to kayak down the Hudson River through 2 locks to raise awareness and funds for mesothelioma and the Mesothelioma Applied Research Foundation to honor his daughter Linda.

Linda was diagnosed with mesothelioma at the age of 16, the youngest he had ever heard
of. Ten years later, she has endured countless treatments, multiple surgeries and through it all has done her best to live a “normal” life.  “She has been thru hell and back and it’s been very tough to see your daughter suffer when there’s nothing you can do. Feeling helpless, I felt this was the best I could do to fight this disease,” says Mark Wells.

Mark’s efforts have been a great success. This year, he has over 100 kayakers registered to kayak 16 miles down the Hudson River, going thru 2 locks to raise awareness. The paddle will probably take about 6 hours with festivities at the end.  Mark has already had several articles written about his event, and will have a local radio DJ broadcasting live from her kayak on station 100.3 The Point.

When asked about his expectations for Kayaking for a Cure, Mark says it is “to make this
the biggest kayaking event on the Hudson River and raise awareness of this dreadful disease, which will raise money for research.”  We tip our hats to you Mark. Keep up the good work!

For registration, schedule of events, and sponsorship opportunities visit: http://kayaking4acure.org/

Interested in hosting a fundraiser for the Meso Foundation? For more information on donating your time to plan your own fundraiser, contact Sean Haynie at (703) 879-3823 or email him at shaynie@curemeso.org.  You can also find out more information on being mentored by our Fundraising Co-Chairs Shelly Kozicki and Erica Ruble by visiting our website at http://www.curemeso.org.