Setbacks in Mesothelioma Research Possible Due to Closure of the Only Federally-Funded Mesothelioma Program

The Mesothelioma Applied Research Foundation (Meso Foundation) warns that closure of the National Mesothelioma Virtual Bank (NMVB), the only federally-funded program specifically designated for mesothelioma that recently saw its funding cut as a direct result of the sequester, may cause setbacks in mesothelioma research.

Alexandria, VA (PRWEB) November 04, 2013

Budget Cuts

The Mesothelioma Applied Research Foundation (Meso Foundation) warns that closure of the National Mesothelioma Virtual Bank (NMVB), the only federally-funded program specifically designated for mesothelioma that recently saw its funding cut as a direct result of the sequester (officially known as the Budget Control Act of 2011), may cause setbacks in mesothelioma research.

The NMVB is a virtual biospecimen registry designed to support and facilitate mesothelioma research. The registry, which was housed at the University of Pittsburgh, was a public resource available for use by mesothelioma researchers across the country. Run by Michael Becich, M.D., Ph.D., the NMVB was in its the seventh year of operation with a Federal Funding Notice of Award stating it would be funded until August of 2016 as long as funds were available. In August, Dr. Becich received less than 30-days’ notice, that the funding for the NMVB would be cut as a result of the sequester. This devastating news was delivered by the fiscal management team of the CDC without any input from the program officers responsible for scientifically managing the NMVB at NIOSH. The program was funded by the National Institute of Occupational Safety and Health (NIOSH) of the Center for Disease Control (CDC) and was deemed as an exemplary program in the agency’s 2012 annual report.

The virtual tissue bank was a partnership between the University of Pittsburgh, the Mesothelioma Applied Research Foundation, Mount Sinai School of Medicine, New York University and the University of Pennsylvania.

Investigators will still be able to request the use of biospecimens until August 31st, 2014 as the NMVB is currently under a “no-cost extension,” but without another funding source, there is no guarantee for future access. The virtual bank contains over 1,200 patient specimens.

“We were bracing for the hits from the sequester,” said Mary Hesdorffer, a nurse practitioner with over 16 years of clinical experience in mesothelioma treatment and the executive director of the Mesothelioma Applied Research Foundation, “but we never imagined something as devastating as the obliteration of mesothelioma’s only federally-funded program.”

Mesothelioma is considered one of the most aggressive and deadly of all cancers. With only one FDA approved treatment, patients have few options and research is desperately needed.

“The NMVB has helped numerous researchers make great strides in mesothelioma research; this is a great loss for the mesothelioma community,” added Ms. Hesdorffer.

Mesothelioma is a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos. Approximately 3,000 Americans are diagnosed with mesothelioma every year and an estimated one-third were exposed in Navy ships and shipyards.

ABOUT THE MESOTHELIOMA APPLIED RESEARCH FOUNDATION

The Meso Foundation is the only 501(c)3 non-profit organization dedicated to eradicating mesothelioma and easing the suffering caused by it. The Meso Foundation actively seeks philanthropic support to fund peer-reviewed mesothelioma research; provide patient support services and education; and advocate Congress for increased federal funding for mesothelioma research. The Meso Foundation is the only non-government funder of peer reviewed scientific research to establish more effective treatments for mesothelioma and, ultimately, a cure for this extremely aggressive cancer. To date, the Foundation has awarded over $8.2 million to research.

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

Meso Foundation Participates in Prestigious Conference on Lung Cancer

IASLCOn October 27 – 30, Mary Hesdorffer, the executive director of the Mesothelioma Applied Research Foundation (Meso Foundation), and Melinda Kotzian, the chief executive officer of the Meso Foundation, are scheduled to attend and participate in the 15th World Conference on Lung Cancer  in Sydney, Australia, organized by the International Association for the Study of Lung Cancer (IASLC).

They will be representing the Mesothelioma Applied Research Foundation and will be raising awareness of mesothelioma amidst over 7,000 delegates from over 100 countries.

In her capacity as a nurse practitioner and an expert in mesothelioma treatment and care, Mary is scheduled to speak at several sessions, including one on the use of social media networks to communicate with and provide support to mesothelioma patients. Mary is a viewed as a pioneer in this area. As a speaker, Mary’s travel and lodging costs are entirely covered by IASLC.

Melinda’s travel costs are also covered through a grant by IASLC for which she applied earlier this year. She was one of five grant recipients from all over the world awarded travel grants to enable them to attend this important event.

The Meso Foundation will also be hosting a booth with information about mesothelioma and programs and services provided by the Foundation.

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.

Actor Ed Lauter Dies of Mesothelioma at 74

Ed LauterEd Lauter had a long and successful career as a character actor. Lauter was born and raised in Long Beach, New York, and began his acting career in the 1970s. His film debut was in The Magnificent Seven Ride!, a western released in 1972. Lauter went on to play over 200 film and television roles. On Wednesday, October 16, 2013, Ed Lauter passed away at the age of 74 after battling mesothelioma since he was diagnosed in May.

Throughout his successful career, Lauter appeared on a number of hit television series, including Psych, ER, The Office, The X-Files, The A-Team, Star Trek: The Next Generation, Kojak, and Murder, She Wrote.

Despite his success on television, Lauter may be best remembered for his film roles. He broke into the film scene with his role as Captain Knauer in The Longest Yard in 1974, and later went on to play the role of Duane in the 2005 remake. It was his performance in The Longest Yard that caught the eye of Alfred Hitchcock. Lauter was offered the role of Joseph Maloney in Hitchock’s last film, Family Plot (1976). The actor bonded with the famous director and was set to star in his next film. Unfortunately, Hitchock passed away before the movie was made.

One of Lauter’s most recent roles was that of Peppy, a butler in The Artist, a 2011 silent film and best-picture Academy Award winner. In 2012, Lauter played a role alongside Clint Eastwood in Trouble with the Curve. Lauter continued his career up until his death, and a number of his films are not yet released. He will appear in the upcoming Blind Pass (2013), Becker’s Farm (2014), and the 2014 remake of The Town That Dreaded Sundown.

Mesothelioma is a cancer of the lining of the lungs, chest, abdomen, or heart, and it is considered to be one of the most painful and aggressive cancers. Approximately 3,500 Americans are diagnosed with mesothelioma each year. There is no cure, and treatment options are limited. At the Meso Foundation, we are dedicated to eliminating mesothelioma and ending the suffering it causes through research funding, education, patient and family support, and advocacy. Join our fight by visiting curemeso.org.

What does the Government Shutdown mean for Mesothelioma?

Each week that the government is shutdown, the National Institutes of Health (NIH) will be turning away 200 patients. According to a piece in the Wall Street Journal, NIH director Francis Collins said, “About 200 patients who otherwise would be admitted to the NIH Clinical Center into clinical trials each week will be turned away.”1 An estimated 1000 patients have already been turned away in the past year due to the sequester.2 The Mesothelioma Applied Research Foundation estimates that the NIH sees 125 mesothelioma patients per year, which means that 2.4 mesothelioma patients are being turned away from clinical trials each week that the government is shutdown.

Lisa Gonneville

Lisa Gonneville speaks at the Meso Foundation’s Congressional Briefing on mesothelioma

With only one FDA approved treatment for mesothelioma, patients often turn to clinical trials conducted at NIH after they have exhausted all of their other options. Mesothelioma warrior Lisa Gonneville, who is currently participating in a clinical trial at the NIH, shared her experience with mesothelioma to Capitol Hill staffers on Mesothelioma Awareness Day. “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.”

This shutdown hurts researchers as well. The NIH has already suspended intramural (in-house) research projects, and will stop accepting new patients and enrolling patients in any of the clinical trials it is conducting. If Congress remains at a stalemate, NIH-funded research at universities will continue although researchers could face funding delays. Also, some government-run databases may have problems, as support staff is furloughed. Approval of new NIH extramural grants to researchers in a university setting may be delayed as well.

The NCI Office of Advocacy Relations sent an email out yesterday confirming that no new research would begin, stating “In terms of intramural research, doctors will continue to see patients at the NIH Clinical Center; however, no new research may begin.”

Some other NIH Activities that will cease under a shutdown:

  • Initiation of new protocols at the NIH Clinical Center
  • Basic research conducted by NIH scientists
  • Translational research conducted by NIH scientists that develops clinical applications of scientific knowledge
  • Training of graduate students and postdoctoral fellows at NIH facilities
  • Scientific meetings at NIH facilities
  • Travel of NIH scientists to scientific meetings
  • NIH scientific equipment services
  • Almost all NIH administrative functions
  • NIH mail, cafeterias, and most visitor services

The Mesothelioma Applied Research Foundation will continue to follow the government shutdown and update the community.

View the Washington Post blog here.


Footnotes

[1] The shutdown could prevent kids with cancer from getting treatment
[2] According to the American Cancer Society