ACTION ALERT: Mesothelioma Bill in Congress for Patient Registry

Advocates on Capitol Hill

We have big news and need your help! Today, the ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015’ was introduced in Congress by Congressional Representatives John Katko (R-NY), Jan Schakowsky (D-IL), Chris Collins (R-NY), Peter King (R-NY), Betty McCollum (D-MN), Joe Kennedy (D-MA), and Leonard Lance (R-NJ). This bipartisan bill would establish the nation’s first formal federal registry to track mesothelioma patients. This would provide scientists with adequate clinical data to assist in their research.

This bill came about as a result of our March 2015 Symposium’s Advocacy Day when Meg Meccariello and her mother Elizabeth Lawyer met with Congressman Katko. The Lawyer family has been greatly impacted by mesothelioma. Meg, who is a mesothelioma patient herself, has lost her father Charles Lawyer and her sister Mary Jo Spano (after whom this bill is named) to mesothelioma. Another one of her siblings has also been recently diagnosed.

“Unlike many chronic and rare diseases, there is currently no national registry available for mesothelioma patients,” said Rep. John Katko. “These registries collect and consolidate information about individuals who suffer from the disease and provide health care professionals, researchers, and patients with the ability to search information about diagnosis, as well as track disease trends, risk-factors, and treatment availability.”

While the introduction of this bill is an important accomplishment for the mesothelioma community, our work is not yet done – we need your help! In order to ensure passage of the bill through the House of Representatives, it is critical for other Representatives to announce their support for the legislation as well.

Please use our Action Center to email your congressional representative and urge him/her to co-sponsor the ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015′. If you prefer to call your representative, you can use our website to find their contact information.

Below are some brief talking points that you can use:

  • Mesothelioma is a deadly form of cancer linked to exposure to asbestos for which there is no cure.
  • The five year survival rates are less than 10%.
  • Currently, there is no formal federal registry to keep track of mesothelioma patients.
  • The ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015′ would establish the first ever federal mesothelioma registry, providing clinical trial information, clinic information, and reports to help researchers identify and develop a cure to this deadly disease.
  • I urge you to co-sponsor this important legislation. Linked here is a ‘Dear Colleague’ letter circulated on Capitol Hill to garner further Congressional support that includes more information about the bill. Again, thank you very much for your support. Please do not hesitate to contact me with any questions you may have.

Click here to take action now!

NIH to Start Enrollment for Precision Medicine Research

Patient ResearchIn his most recent State of the Union address, President Obama announced a bold new research effort to revolutionize how we improve health and treat disease. According the White House website, the Precision Medicine Initiative, as it’s called, will pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.

Last week, we learned that the one million patient research cohort at the National Institutes of Health (NIH) could begin enrolling patients in the next fiscal year.

As noted by the NIH, “Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. Many efforts are underway to help make precision medicine the norm rather than the exception.”

The NIH is currently finalizing a plan for the cohort that will be reviewed by their research advisers and then must receive a sign-off from NIH Director Francis Collins.

Kathy Hudson, NIH’s director for science, outreach, and policy, believes the funding for the cohort will be approved by Congress, noting that Senate and House appropriators will invest $200 million for the Precision Medicine Initiative.

In addition to necessary funding, the cohort initiative will require policy updates, including those for protection of human research participants. Also, patient access to fully interoperable electronic health records will need to be improved.

As the original Politico article notes, “Hudson said NIH is working with the Senate to include any necessary policy updates for the initiative into its biomedical reform legislation. The chamber’s work is expected to ultimately synch with the House’s recently passed 21st Century Cures bill.”

For more information on precision medicine and the Precision Medicine Initiative, visit nih.gov/precisionmedicine.

A Message from the CEO

Melinda Kotzianby Melinda Kotzian, Chief Executive Officer, Mesothelioma Applied Research Foundation

Over the last 24 hours, news broke that some cancer charities raised funds and did not use the money responsibly. The Meso Foundation has always prided itself on transparency when it comes to financials. We voluntarily subject our organization to an audit every year and then submit our financials to be reviewed by Charity Navigator (they rate us as a 4-star (out of 4) charity and give us a transparency score of 100 (out of 100)) and the Better Business Bureau. At curemeso.org/about, you can view our latest 990, financial statements, and annual report.

To make sure that other charities are financially responsible, you can do the following:

  • Look for financial statements and annual reports on the organization’s website
  • Check www.charitynavigator.org or www.bbb.org to see how the organization is rated
  • Call the organization and ask how much of their money is going toward programs

A reputable nonprofit organization will have a level of financial transparency. At the Meso Foundation, individuals contribute 65% of the money coming in to the organization, while law firms and pharmaceutical companies contribute the remaining 35%. Of these contributions, 86% goes directly into our programs, including patient and family support, research, education, advocacy, and prevention. Additionally, 9% goes towards fundraising and 5% goes towards management.

With $0.86 per dollar going into programs, the Meso Foundation is able to help over 600 patients, caregivers, and bereaved per month and has funded $9 million in mesothelioma research. Additionally, with the help of our advocacy programs, $9.3 million in government funding has been contributed to mesothelioma research.

To learn more about the Meso Foundation, what we do, and how we rely on donations, visit curemeso.org/about.

Mesothelioma Researcher Receives Prestigious Grant from Department of Defense

Marjorie ZaudererMarjorie Zauderer, MD, is a medical oncologist at Memorial Sloan Kettering Cancer Center specializing in the care of lung cancer and mesothelioma patients, and serves as a member of the Meso Foundation’s Science Advisory Board. Recently, Dr. Zauderer was granted the Career Development Award to fund her mesothelioma research project.

Dr. Zauderer received the Career Development Award for her current research project involving the role of the BAP 1 gene (BRCA associated protein-1) in mesothelioma. Inherited mutations in the BAP1 gene have been shown to predispose patients to malignant pleural mesothelioma. “A better understanding of this gene could mean a better understanding of mesothelioma and how it develops in patients,” Zauderer states.

Dr. Zauderer began working on this project three years ago and has been gathering specimens and samples throughout this time. She predicts that enough samples will be collected within the next year or two to begin analysis that could yield significant insights and statistics. Her goal in 3 to 5 years is to have a plausible drug that has already completed phase 1 testing or is ready to begin phase 1 testing in clinical trials.

In an interview, Dr. Zauderer expressed her passion for her work, citing her many college application essays that she recently came across. “All my applications were about how I wanted to use genetics to help medicine. 20 years later, that’s actually what I do,” Zauderer states.

The Career Development Award provides funding from the Department of Defense to support a specific research project. Funding is provided to the selected project over a three year period, during which certain research components must be met and specific goals achieved. Mesothelioma is a disease of interest to the Department of Defense, as an estimated one third of mesothelioma patients either served in the Navy or worked in shipyards.

Learn more about Marjorie Zauderer at curemeso.org.

Meso Warrior, Rich Mosca, Featured on Everyday Health

Curemeso.orgLast week, mesothelioma survivor and mesothelioma community member, Rich Mosca, shared his powerful story of diagnosis and the beginning of his eight-year battle with meso on Everyday Health.

Mesothelioma is known to be very difficult to treat. But before treatment can even begin, a patient needs a diagnosis. In his contribution to the My Cancer Story section of the popular website, Rich details the long road it took to finally learn he has mesothelioma, and the unexpected relief of obtaining the diagnosis.

“Having no idea what was wrong, we had no idea what to do,” says Rich in his blog.

Rich’s story points out what is, perhaps, the disconnect in the world of mesothelioma – so many have heard about it from TV commercials, yet so few doctors actually think about it when patients present with certain symptoms.

To read Rich’s article, “Despite the TV Ads, Even Doctors Didn’t Know Much About My Cancer” in its entirety, please visit Everyday Health.