Bonnie Anderson: Building a Relationship with your Legislators

Bonnie Anderson is advocating for mesothelioma by building relationships with her legislators, including Congressman Leonard Lance.

Bonnie Anderson with Congressman Leonard Lance (R-NJ)

Building a relationship with your legislators is a very important part of being an advocate, and mesothelioma warrior Bonnie Anderson is a wonderful example to us all. Bonnie has been one of the greatest advocates for mesothelioma research. She was the first mesothelioma warrior ever to be awarded the Bruce Vento Hope Builder award in 2012. Bonnie has established a close relationship with her Congressman, Leonard Lance (R-NJ), over many years.  She attends our Annual Advocacy Day each year when she visits his Washington, D.C. office to educate him about mesothelioma and the need for funding to progress mesothelioma research. She is active in our Meso Ambassador Program as well, where she regularly communicates with his office by sending emails directly through our action center or calling and speaking to staffers. Bonnie says, “it takes perseverance in speaking to our representatives, and becoming familiar with their aides (who have the keys to the kingdom). I tell every aide about mesothelioma, from the front desk (with the question do you know what mesothelioma is?) to every aide that I am introduced to. The key is following up so that your name is recognized when you do call, write or visit them (and you know their names too).”

This sort of legwork is necessary for members of Congress to learn your name and your issues, so that when you come along with an “ask” they already know who you are and what your issue is. Bonnie continues, “My mentor, June Breit, told me to stay on their doorsteps and to be persistent until noticed. At the time, I really thought that there was no way I could do that. Having a Congressman, his health aide and a Chief of Staff explain the process of how our political system works at each step when I do approach him is so important.” Bonnie also recognizes the importance of following up and saying thank you. “I follow up with thank yous. The unfortunate side is the lower level aides change constantly, the positive side is most upper level aides are key advisors for their Congressmen.”

Just last month, the meso community had the great success of having Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) send a Dear Colleague letter asking all of the Members of the House of Representatives to join them in urging the National Cancer Institute (NCI) to create a scientific framework for mesothelioma. At a time when Congress is very divided by a party line, Bonnie helped us to cross our greatest hurdle of getting a Republican to sign on to our letter, as it was penned by two Democrats. Often, the most difficult task of an advocate is to garner bipartisan support, but once you have the support of one member of the opposing party, more of them are likely to join.

Thanks to Congressman Lance’s pioneering signature, three additional Republicans signed on to the letter, Don Young (R-AK), Glenn Thompson (R-PA) and Jason Chaffetz (R-UT), guaranteeing a strong show of bipartisan support for mesothelioma. Congressman Lance signed on to this letter in honor of his constituent Bonnie, whom he has come to know through her advocacy. He reached across the aisle as the first Republican signature on the McCollum/Pingree letter to the NCI, which is no small feat in this divided Congress. The meso community is very grateful to Bonnie for helping us to cross this hurdle.

When the final letter is sent to the National Cancer Institute, we will post the final list of signers.

If you want to follow in Bonnie’s footsteps, sign up for the Mesothelioma Ambassador Program to build your relationship with your Members of Congress.

To learn more about the McCollum Pingree Dear Colleague Letter, check out this blog post.

The Meso Foundation Congratulates Reps. McCollum and Pingree for their Efforts to Advance Mesothelioma Research

The Meso Foundation congratulates Congresswomen Betty McCollum and Chellie Pingree for sending a letter to all members of the U.S. House of Representatives requesting they sign on to urge the National Cancer Institute to further mesothelioma research.

Alexandria, VA (PRWEB) December 03, 2013

Capitol HillYesterday, U.S. Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) sent a “Dear Colleague” letter to all members of the U.S. House of Representatives asking them to join them in urging the National Cancer Institute to create a scientific framework for mesothelioma. The Mesothelioma Applied Research Foundation (Meso Foundation) has long advocated for the National Cancer Institute to increase their focus on mesothelioma, and congratulates Representative McCollum and Representative Pingree for their efforts on behalf of the mesothelioma community, including patients and families, physicians, advocates, and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma.

“Congresswomen McCollum and Pingree are leading a very important effort for everyone affected by mesothelioma by encouraging the National Cancer Institute to create a scientific framework to progress mesothelioma research,” said Meso Foundation’s executive director and nurse practitioner, Mary Hesdorffer.

“This is an incredible way to help thousands of patients affected by mesothelioma, and also honor our distinguished former board member and Congresswoman McCollum’s predecessor, Bruce Vento.”

Bruce Vento, was a prominent member of Congress who, after nearly 24 years of service succumbed to mesothelioma only eight months after diagnosis.

Representative Pingree’s constituent, mesothelioma survivor Lisa Gonneville spoke at the Capitol Hill briefing on Mesothelioma Awareness Day (September 26). Mrs. Gonneville pleaded that the staffers do something to address this deadly cancer.

“I’ve endured all of the treatment options available for mesothelioma, which are very limited,” said Mrs. Gonneville, “my only hope at this point is clinical trials.”

The Recalcitrant Cancer Research Act of 2012 was signed into law by President Obama on January 2, 2013 as part of the National Defense Authorization Act (Public Law No. 112-239), giving the Director of the National Cancer Institute (NCI) the ability to identify recalcitrant cancers for which to establish scientific frameworks that will guide research efforts.

For each recalcitrant cancer, NCI is to convene a working group of both Federal and non-Federal individuals to provide expertise and assistance in developing the scientific framework. The frameworks are to be completed within 18 months of enactment, then submitted to Congress and made publicly available on the HHS website within 30 days. The bill requires the progress of each scientific framework be reported in the National Institutes of Health (NIH) Biennial Report, with an assessment of progress made in improving outcomes for recalcitrant cancers. The bill further states that the NCI Director “shall consider” each relevant scientific framework when making recommendations for exception funding for grant applications.

The Mesothelioma Applied Research Foundation has independently funded over $8.2 million in peer-reviewed mesothelioma research to date.

Mesothelioma is a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos. Medical experts consider it one of the most aggressive and deadly of all cancers. Approximately 3,000 Americans are diagnosed with mesothelioma every year and an estimated one-third were exposed while serving in the Navy or working in Navy shipyards .

ABOUT THE MESOTHELIOMA APPLIED RESEARCH FOUNDATION

The Meso Foundation is the leading organization dedicated to eradicating mesothelioma and easing the suffering caused by it, by funding peer-reviewed mesothelioma research, providing patient support services and education, and advocating Congress for increased federal funding for research. Mesothelioma funding, per death, has historically been extremely low, and even as recently as 2007, the NCI reported that mesothelioma receives as little as 9 times less funding than other cancers. The Meso Foundation was founded in 2000 to address this imbalance and since then has independently funded over $8.2 million in peer-reviewed mesothelioma research.

More information is available at http://www.curemeso.org.

Recalcitrant Cancer Act: How this law can facilitate progress in mesothelioma research

ResearcherThe Recalcitrant Cancer Research Act of 2012 was signed into law by President Obama on January 2, 2013 as part of the National Defense Authorization Act (Public Law No. 112-239)1, giving the Director of the National Cancer Institute (NCI) the ability to identify recalcitrant cancers for which to establish scientific frameworks that will guide research efforts.

For each recalcitrant cancer, NCI is to convene a working group of both Federal and non-Federal individuals to provide expertise and assistance in developing the scientific framework. The frameworks are to be completed within 18 months of enactment, then submitted to Congress and made publicly available on the HHS website within 30 days. The bill requires the progress of each scientific framework be reported in the National Institutes of Health (NIH) Biennial Report, with an assessment of progress made in improving outcomes for recalcitrant cancers. The bill further states that the NCI Director “shall consider” each relevant scientific framework when making recommendations for exception funding for grant applications.2

In this legislation, a recalcitrant cancer is defined as a cancer “for which the five-year relative survival rate is below 50 percent.” Unfortunately, mesothelioma meets this definition, with only a five to ten percent five-year survival rate.  The legislation also seeks to target cancers that have “not seen substantial progress in the diagnosis or treatment.” Unfortunately, mesothelioma fits this stipulation as well. With only one FDA-approved treatment, many patients have to resort to off label use of chemotherapies, drastic surgery or with luck participation in clinical trials. There is also no test currently available for early detection of mesothelioma.

Substantial progress in mesothelioma has been made, and a scientific framework would help to further the advancement of mesothelioma research.  A gene that is linked to mesothelioma has been identified, and the NCI has recently announced patients responded well to treatment in their SS1P clinical trial. The Meso Foundation has already sent a letter to Dr. Harold Varmus, the Director of the NCI, urging him to designate mesothelioma as a recalcitrant cancer, and we will continue our advocacy efforts. Stay tuned for updates on our progress.

Sign up for the Mesothelioma Ambassador Program to join us in advocating that mesothelioma be designated as a recalcitrant cancer for a scientific framework.

To view the text of the bill, visit Thomas.gov and choose the advanced search option, then search HR 733.

Read more about the progress of the SS1P trial.

Learn more about the BAP1 gene in our blog post, “Genetics and the BAP1 Gene in Mesothelioma.”


Footnotes

1. www.thomas.gov, accessed November 20, 2013
2. http://legislative.cancer.gov, accessed November 20, 2013

UPDATE: Mesothelioma Included in Department of Defense Bill

Congressionally Directed Medical Research Programs logoOn July 24, the U.S. House of Representatives passed a Defense Funding Bill that included $16 million in funding that is eligible to be awarded to mesothelioma research.

The House approved the fiscal year 2014 Defense Appropriations bill (H.R. 2397) on a vote of 315 to 109. The bill includs funding for the Congressionally Directed Medical Research Programs, including the Peer Reviewed Cancer Research Program in which mesothelioma is a topic area.

Each year, the Meso Foundation advocates to continue and increase this vital funding. As a result, $8.8 million dollars has been given to mesothelioma research to date. This is a victory in today’s tough economic climate.

For more information, read our earlier blog regarding this topic.

Mesothelioma Mobilization in Britain

Mary and the Lord Mayor of Birmingham

Lord Mayor of Birmingham, Cllr Mike Leddy and Mary Hesdorffer, NP Executive Director of the Meso Foundation

by Laurie Kazan-Allen

The publication of an article entitled “Mesothelioma – The British Disease” in mid-June, 2013 set the tone for a summer of legislative, political, and public mobilization on asbestos. As groups representing asbestos victims lobbied politicians over the unfairness of provisions in the Mesothelioma Bill, members of the House of Lords tabled amendments to address the woeful lack of British funding for mesothelioma research. Lord Alton proposed that a levy be imposed on the insurance industry to fund medical research into mesothelioma; unfortunately, this amendment was defeated during a heated debate in the House of Lords. After the summer recess, the Bill will go to the House of Commons.

The importance of research funds and a coordinated research strategy were highlighted on July 3, 2013 in a presentation made by Mary Hesdorffer, NP Executive Director of the Mesothelioma Applied Research Foundation (Meso Foundation) to the Parliamentary Asbestos Sub-Group during its annual seminar in the House of Commons. Mary’s participation at this high-level Westminster event was warmly received as was the input by her colleague Dr. Daniel Sterman from the University of Pennsylvania Medical Center. Ms. Hesdorffer, NP and Dr. Sterman were the first American medical experts to take part in this event which has been a fixture of the Parliamentary calendar for well over a decade.

Commenting on her experience, Ms. Hesdorffer said:

“I was delighted to have this opportunity to discuss in Parliament the role of government as well as private sector funding in spurring innovative research to end the suffering caused by mesothelioma. All opportunities to collaborate and confer on the needs of those affected by mesothelioma are most welcome and in light of the increasing number of cases being diagnosed worldwide, we need to explore ways in which we can work more closely together on this global pandemic.”

By good luck and advanced planning, Mary and Dan were able to take part in Action Mesothelioma Day (AMD) events on July 5 in Birmingham and Liverpool. AMD is marked by asbestos victims groups, cancer charities, and civic officials throughout the country and has become a focal point for efforts to raise research funds and public awareness of mesothelioma, a disease killing more than 2,000 British citizens every year. It was a privilege to join Mary in Birmingham for the activities mounted by Asbestos Support West Midlands. The appeal for mesothelioma research funds by the Birmingham group raised £4,500!

Speaking about the day’s events, Doug Jewell, Coordinator of Asbestos Support West Midlands, commented:

“It seemed that Mary and Laurie brought the good weather with them when they came to Birmingham. After the 2012 storms, it was great to be able to be able to mark Action Mesothelioma Day under blue skies. The speakers’ input during the official segment of the program was much appreciated by our friends and colleagues, most of whose lives have been impacted by mesothelioma. There was a great deal of interest in Mary’s discussion of the clinical trials and new drugs being used in the US and UK with many people following up on information she presented in the days after the seminar.”

In the aftermath of AMD, work continues by mesothelioma sufferers and asbestos victims’ groups to raise awareness of a deadly epidemic that shows no signs of abating. Research means hope and it was a message of hope that Mary and Dan so ably transmitted during the time they spent with us in the UK.

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 at www.britishasbestosnewsletter.org and www.ibasecretariat.org