KATKO INTRODUCES BIPARTISAN LEGISLATION TO CREATE NATIONAL MESOTHELIOMA PATIENT REGISTRY

July 29, 2015
Press Release

WASHINGTON, D.C. – U.S. Representative John Katko (NY-24) today introduced bipartisan legislation in the U.S. House of Representatives to establish a national mesothelioma patient registry.  The ‘Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2015’ is district-focused legislation named in honor of Mary Jo Lawyer Spano, a Central New York woman who late last year lost her four-year battle with mesothelioma, an asbestos-related form of cancer that affects the lining the lungs, chest, heart, and abdomen. Spano’s sister, Meg Meccariello, who also suffers from mesothelioma, and mother, Elizabeth Lawyer, met with Rep. Katko early this Congress to advocate for the development of a National Mesothelioma Patient Registry.

“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.”

Spano’s father, Charles Lawyer, worked for an elevator company where he was exposed to asbestos and developed mesothelioma.  Sadly, Lawyer’s family was also exposed to asbestos fibers from his body and clothing.  Meccariello, a former nurse educator at St. Joseph’s Hospital Health Center in Syracuse, continues to receive chemotherapy and hopes that the creation of a national registry will give patients nationwide the hope to work towards a “new” normal way of life, even while recovering from mesothelioma.

Katko’s legislation creates the National Mesothelioma Patient Registry, a self-enrolled public database, which will collect and house information about individuals living with mesothelioma. 

“In addition to promoting and coordinating research efforts to better treat and combat mesothelioma, the creation of a national registry will help raise awareness and advocacy, expand resources and support networks, and provide hope for families like those of Mary Jo Lawyer Spano,” concluded Katko.

Rep. Katko’s legislation to create a national mesothelioma registry has the support of national organizations and stakeholders, including the Mesothelioma Applied Research Foundation and the International Association of Heat and Frost Insulators and Allied Workers.

“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.

Information from the registry will be used to facilitate and enhance research on mesothelioma, specifically by allowing:

  • Development and revision of standards of care and treatment for mesothelioma patients;
  • Sharing of evidence-based information between physicians across the United States;
  • Implementation of benchmarks to improve care in mesothelioma clinics; and
  • Identification of centers that provide the most beneficial care to patients.

The bill has bipartisan support, and Rep. Katko was joined by Reps. Jan Schakowisky (D-IL), Chris Collins (R-NY), Peter King (R-NY), Joe Kennedy (D-MA), Betty McCollum (D-MN), and Leonard Lance (R-NJ) in introducing today’s legislation.

Congressman John Katko represents the 24th Congressional District of New York, which includes all of Onondaga, Cayuga, and Wayne Counties, and a portion of Oswego County.  For more information, please visit Katko.house.gov orfacebook.com/RepJohnKatko.

###

 

Issues: