Bill to Create Patient Registry for Deadly Cancer Introduced in Congress

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Today, the Mesothelioma Applied Research Foundation (Meso Foundation) applauds the introduction of the 'Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015' that U.S. Congressman Katko of New York introduced to establish the nation’s first formal federal registry to track mesothelioma patients.

For many diseases, the addition of a patient registry has been the missing catalyst toward accelerating progress. We expect that mesothelioma will also see life-saving treatment advances as a result of this bill

The Mesothelioma Applied Research Foundation (Meso Foundation) applauds the introduction of the ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015’. The bill was introduced in Congress yesterday by 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). The purpose of the bill is to establish the nation’s first formal federal registry to track mesothelioma patients. The registry would provide scientists with adequate clinical data to assist in their research.

This bill came about as a result of the Mesothelioma Applied Research Foundation’s 2015 Advocacy Day. During the event, two advocates for the Foundation, Meg Meccariello and her mother Elizabeth Lawyer, met with Congressman Katko. The Lawyer family has been greatly impacted by mesothelioma. Ms. Meccariello, herself a mesothelioma patient, lost her father Charles Lawyer and her sister Mary Jo Spano, after whom the act is named, to the same cancer. Another sibling of Ms. Meccariello was also recently diagnosed with mesothelioma.

“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.”

The National Mesothelioma Patient Registry would provide the ability for mesothelioma patients to self-enroll their data with the ultimate goal to assist researchers in finding causality, treatment and a cure for mesothelioma patients.

Mesothelioma is a deadly form of cancer for which there is no cure. At five years from diagnosis, the survival rate is between 5 and 10%.

“For many diseases, the addition of a patient registry has been the missing catalyst toward accelerating progress. We expect that mesothelioma will also see life-saving treatment advances as a result of this bill,” said Melinda Kotzian, the chief executive officer for the Mesothelioma Applied Research Foundation.

ABOUT THE MESOTHELIOMA APPLIED RESEARCH FOUNDATION
The Meso Foundation is the only 501(c)(3) nonprofit organization dedicated to eradicating mesothelioma and easing the suffering caused by this cancer. The Meso Foundation actively seeks philanthropic support to fund 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 develop life-saving treatments for this extremely aggressive cancer. To date, the Foundation has awarded over $9 million to research. More information is available at http://www.curemeso.org.

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