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

Mesothelioma Expert Mary Hesdorffer Advocates Before British Parliament

Mary at Parliament

Mary Hesdorffer, NP with Laurie Kazan-Allen, Dan Sterman, MD, and Jim Sheridan in front of the UK Parliament.

Meso Foundation’s executive director, Mary Hesdorffer, Nurse Practitioner, is in London and wanted to share with you that she just spoke at the annual asbestos seminar of the All Party Parliamentary Group on Occupational Safety and Health in the House of Commons.  Her talk entitled, Mobilizing for a Mesothelioma Cure, stresses how funding research is the key to eliminating mesothelioma.

“I am thrilled to be able to represent the Meso Foundation and the role that it has in funding the most promising peer-reviewed research from around the globe,” said Mary. The Meso Foundation has funded researchers in the United Kingdom and six other countries because we believe that it is necessary to collaborate in order to find a cure for mesothelioma.

Join our cause in the fight against mesothelioma. Learn more about how you can get involved.

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.