First Congressional Cancer Hearing in Six Years a Success

Congressional Cancer Research Hearing

by Jessica Barker, Director of Government Affairs, Mesothelioma Applied Research Foundation

Wednesday afternoon, the Senate Special Committee on Aging held a hearing on cancer research featuring Dr. Harold Varmus, Director of the National Cancer Institute (NCI) and actress Valerie Harper, a survivor of Leptomeningeal carcinomatosis (LC), a rare complication of cancer in the brain. This was the first Congressional hearing with a dedicated focus on cancer in six years. The hearing, titled The Fight Against Cancer: Challenges, Progress, and Promise examined federal funding for cancer research and recent treatment improvements, and explored challenges facing survivors and scientists.

The hearing gave each of the five witnesses the opportunity to give testimony, which was followed by questions from the Members of the Committee. The witnesses included:

  • Harold E. Varmus, MD, Director, National Cancer Institute, National Institutes of Health
  • Valerie Harper, Actress and Cancer Survivor
  • Thomas Sellers, PhD, MPH, Director, H. Lee Moffitt Cancer Center and Research Institute
  • Mary Dempsey, Assistant Director and Co-Founder, The Patrick Dempsey Center for Cancer Hope and Healing
  • Chip Kennett, Advocate and Cancer Survivor

Each witness gave a powerful opening statement. Valerie Harper urged Members of Congress to think of cancer research dollars as an investment rather than spending. Ms. Harper also voiced a hopeful message for cancer patients, as she is positive and living life to the fullest despite her prognosis, stating “I am not going to the funeral until the day of the funeral!”

While not mentioned in his testimony, Dr. Varmus was asked by Senator Kelly Ayotte (R-NH) about the Department of Defense’s (DoD) Congressionally Directed Medical Research Program (CDMRP). The CDMRP has been a great source of funding for mesothelioma, funding $9.3 million to date. Asked if the DoD and the NCI collaborated, Dr. Varmus emphasized that all of the federal agencies that do medical research, as well as all researchers around the country share their research through scientific meetings (such as the Meso Foundation’s Symposium) and through journals. When specifically asked if he thought the program should be in the DoD or under the umbrella of the National Institutes of Health (which houses the NCI), he stated that he does not have a problem with the CDMRP being housed at the DoD and that he welcomes co-funding.

Senator Sheldon Whitehouse (D- RI) asked Dr. Varmus about the Recalcitrant Cancer Act of 2012 and its progress. Dr. Varmus told the committee that he had completed the scientific framework for pancreatic cancer, and that he would be completing the scientific framework for small cell lung cancer by the statutory deadline of July 2014. This is good news for the mesothelioma community.

To view the hearing, please visit the Senate Special Committee on Aging website.

Meso Warrior Bruce Jackson Presents Congresswoman Betty McCollum with the Bruce Vento Hope-Builder Award

Dodds, McCollum, and JacksonOn April 23, 2014, mesothelioma warrior Bruce Jackson presented Congresswoman Betty McCollum with the Bruce Vento Hope-Builder Award for sending a letter to Dr. Harold Varmus, Director of the National Cancer Institute (NCI), to urge the NCI to further mesothelioma research. The Bruce Vento Hope-Builder Award is presented each year to an individual or individuals who create hope for meso warriors and their loved ones through advocacy.

In February, U.S. Congresswomen Betty McCollum (D-MN) led the effort to send a letter to Dr. Harold Varmus, urging him to create a scientific framework for mesothelioma to progress research. Representative McCollum recruited eighteen of her colleagues from both sides of the aisle to join her in sending the letter. The Mesothelioma Applied Research Foundation (Meso Foundation) has long advocated for the National Cancer Institute to increase their focus on mesothelioma, and Representative McCollum has been a stalwart champion for the cause. Representative McCollum advocates for mesothelioma in honor of her 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.

“I’m honored to represent the Meso Foundation community in awarding the Bruce Vento Hope-Builder Award to Rep. Betty McCollum. It’s good people like Rep. McCollum who give people like me hope for the future,” said Bruce Jackson. He added, “I have more music to make! And I’m not going down without a fight!”

Bruce Jackson, a native Minnesotan, was diagnosed with peritoneal mesothelioma in June of 2008. His doctor at the time told him to “Google it” because he knew nothing about the cancer, only that it was “terminal.” The online search for mesothelioma led Bruce and his girlfriend Beth Dodds to the Mesothelioma Applied Research Foundation. Mary Hesdorffer, Executive Director of the Meso Foundation, had them on a plane within 2 weeks of diagnosis to attend the Meso Foundation’s International Symposium on Malignant Mesothelioma in Washington, D.C., where they learned everything about this cancer.

In August of 2008, Bruce had surgery to remove his omentum and received the Hyperthermic Intraperitoneal Chemotherapy (HIPEC) procedure at the National Institutes of Health with Dr. Pingpank. Bruce remained with no evidence of disease (NED) for four years, but the cancer returned in August of 2012. Bruce had surgery at the University of Minnesota under the guidance of Dr. Robert Kratzke. Unfortunately, Bruce’s cancer returned again in March of 2014 and he is now in talks with Dr. Pingpank and his team at the University of Pittsburgh to have surgery and the HIPEC procedure again.

Bruce Jackson and Beth Ann Dodds are full-time musicians who met in 2007 in St. Paul, Minnesota when Beth auditioned to be a singer in Bruce’s band, Bruce Jackson & The Moondogs88 Band. The Moondogs88 Band is a funky, jazzy ensemble that plays in and around the Minneapolis/St. Paul area. Bruce has played piano in countless bands and studied under world renowned piano great, Manfredo Fest. Bruce has traveled the world sharing the stage with many musical greats for over 40 years. Bruce is now teaching piano, accordion, mandolin, guitar and harpsichord to children and adults in the Twin Cities metro area. Beth is a full-time student in addition to her singing career, returning to academic life to complete her degree in nutrition. Beth and Bruce are prominent members of the Meso Fighters Band, rocking the socks off of Symposium attendees each year.

Bruce and Beth even had the chance to show off their musical talent for Congresswoman McCollum, as they sang her “You Are My Sunshine.”

Bruce Jackson Presents the Bruce Vento Hope-Builder Award to Congresswoman Betty McCollum




Mesothelioma warrior Bruce Jackson and his girlfriend, Beth Dodds, represented the meso community on April 23, 2014 as they presented the Meso Foundation’s Bruce Vento Hope Builder Award to Congresswo…

Throughout this journey, Bruce is living life to its fullest, believing that despite the diagnosis of meso, life can be amazing. It might not be what most people think – that life with cancer can be amazing – but the addition of meso in his life has taught him that life is precious, beautiful and full of LOVE. He is an inspiration to us all.

To learn more about Congresswoman McCollum’s advocacy for mesothelioma research, click here.

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

BREAKING NEWS: SS1P Clinical Trial Results Published

Raffit_hassanToday, the Science Translational Medicine journal published the article “Major Cancer Regressions in Mesothelioma After Treatment with an Anti-Mesothelin Immunotoxin and Immune Suppression” by Dr. Raffit Hassan of the NCI, former chair and current member of the Meso Foundation’s Science Advisory Board.

Dr. Hassan explains:

Very few treatment options exist for patients with mesothelioma who have failed chemotherapy. In this months issue of Science Translational Medicine scientists from the National Cancer Institute report a promising treatment that may benefit some patients with mesothelioma. This treatment involves an immunotoxin (which consists of an antibody linked to a potent toxin) SS1P developed in Dr. Ira Pastan’s lab at the NCI, that targets the protein mesothelin present on mesothelioma cells. In previous trials SS1P had limited activity since most patients developed antibodies against the drug. However, in the current study, led by Dr. Raffit Hassan at the NCI, using two other drugs, pentostatin and cytoxan, which suppress part of the immune system, they were able to give patients more doses of SS1P. Out of the 10 evaluable patients treated 3 patients had significant tumor shrinkage and all three patients are alive more than 18 months after starting therapy. In addition, 2 patients who had previously progressed on chemotherapy had a tumor response when treated with chemotherapy following SS1P. Although a small study, these responses in patients who had advanced treatment refractory disease are encouraging and the investigators plan to conduct a larger study to validate these results.

The abstract of the study can be found here. The article was also followed by an editorial by Dr. Ravi Salgia and Dr. Martin Sattler: Sci Transl Med-2013-Salgia-208fs38.

For more information, please contact Mary Hesdorffer, Nurse Practitioner at mary@curemeso.org, (703) 879-3820, or use our Ask the Expert feature to get answers to your questions.