There isn't a national registry for patients with mesothelioma, but U.S. Rep. John Katko is looking to change that while paying tribute to a central New York who battled the disease.
Katko, R-Camillus introduced the Mary Jo Lawyer Spano Mesothelioma Patient Registry Act, a bill which would create a voluntary registry to collect information about mesothelioma patients.
The legislation is named in honor of Spano, a Syracuse woman who died in 2014 after a four-year battle with mesothelioma.
Katko's office said he met with Meg Meccarielo, Spano's sister who has also been diagnosed with the disease, and Elizabeth Lawyer, Spano's mother. They urged Katko to support the creation of a national mesothelioma patient registry.
"Unlike many chronic and rare diseases, there is currently no national registry available for mesothelioma patients," Katko said. "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."
Katko said the bill will help develop treatment standards for patients, allow doctors to share information about the disease and set benchmarks to improve care at mesothelioma clinics.
"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," he said.
Mesothelioma is caused by exposure to asbestos and affects the tissues that surround the heart, lungs and stomach. According to the Mesothelioma Applied Research Foundation, approximately 3,000 Americans are diagnosed with the disease each year.
In Spano's case, her father, Charles Lawyer, was an employee for an elevator company and was exposed to asbestos. He, too, suffered from mesothelioma.
Spano and the rest of her family were exposed to asbestos by fibers that collected on her father's body and clothes.
Katko's bill has bipartisan support in the House. The bill is cosponsored by U.S. Reps. Joe Kennedy, Betty McCollum and Jan Schakowisky, all Democrats, and three Republicans — U.S. Reps. Chris Collins, Peter King and Leonard Lance.
The legislation is also backed by national organizations, including the International Association of Heat and Frost Insulators and Allied Workers and the Mesothelioma Applied Research Foundation.
"For many diseases, the addition of a patient registry has been the missing catalyst toward accelerating progress," Mesothelioma Applied Research Foundation CEO Melinda Kotzian said. "We expect that mesothelioma will also see life-saving treatment advances as a result of this bill."