New Bill Seeks to Create First Mesothelioma Registry in US
August 12, 2015
People diagnosed with mesothelioma often feel there is little public information about the asbestos-related cancer.
Several existing state cancer registries focus on more common cancers, including lung, breast, prostate and colorectal. While there are more than 221,000 new lung cancer cases annually in the U.S., mesothelioma is rare — about 3,000 new cases each year.
The Surveillance, Epidemiology, and End Results (SEER) Program, a national cancer registry, tracks incidence rates by state, but it does not track new cases of mesothelioma at a national level. While it publishes fact sheets with information about new cases, survival statistics, trends, clinical trials and prevention for common cancers, it doesn’t publish any for mesothelioma.
A vast lack of specific and useful mesothelioma information for patients and their families spurred U.S. Rep. John Katko, R-N.Y., to propose a bipartisan bill that aims to establish a national registry for patients diagnosed with mesothelioma.
The Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015 (H.R. 3284) would “develop a patient registry to collect data on mesothelioma, including information with respect to the incidence and prevalence of the disease in the United States.”
“Unlike many chronic and rare diseases, there is currently no national registry available for mesothelioma patients,” Katko wrote in a press release. “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.”
Congressional cosponsors include: Reps. Chris Collins, R-N.Y., Joe Kennedy III, D-Mass., Pete King, R-N.Y., Leonard Lance, R-N.J., Betty McCollum, D-Minn. and Jan Schakowsky, D-Ill.
History and Purpose of H.R. 3284
The bill honors Mary Jo Lawyer-Spano, a Syracuse, New York, resident who died in 2014 after battling the disease for four years. She was 52. Her sister, Meg Meccariello, 55, was diagnosed with the asbestos-related cancer at the same time. Meccariello continues to fight the cancer.
Their father, Charles Lawyer, also died of mesothelioma. Meccariello suspects her father’s job at an elevator company exposed him and his family to asbestos. Some elevator parts were once coated with asbestos to keep them from overheating.
Women often develop the disease through secondhand contact when they handle the work clothes of their husbands or sons who work with the toxic mineral.
The mesothelioma patient public registry will:
- Enhance and expand infrastructure for tracking the epidemiology of mesothelioma patients
- Collect and report on treatment outcomes, patient longevity, patients receiving treatment by specific hospital
- Better explain incidence and prevalence in the U.S.
- Facilitate additional research
- Examine occupational and environmental factors that cause the disease
- Outline key demographics (age, gender, race or ethnicity, family history)
In addition to the public and health care providers, the database will also be available to a number of federal agencies, including the National Institutes of Health, U.S. Food and Drug Administration, Centers for Medicare & Medicaid Services, Agency for Healthcare Research and Quality, Department of Veterans Affairs and the Department of Defense.
“This registry has the potential to help people and show people there is an ability to have some longevity, to show people you can get your life back, and that there are places to go for help,” said Meccariello.
Similar Bills in Congress
In addition to the Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015, there are several bills currently in the U.S. Senate that deal with asbestos or mesothelioma.
Sen. Barbara Boxer, D-Calif., in March, introduced the Alan Reinstein and Trevor Schaefer Toxic Chemical Protection Act. It seeks to prioritize asbestos and includes provisions for the U.S. Environmental Protection Agency to ban it. The bill was referred to the Committee on Environment and Public Works.
Also in March, Sen. Dick Durbin, D-Ill., introduced the Reducing Exposure to Asbestos Database (READ) Act. That bill, currently under review by the same committee, is looking to establish a public database of asbestos-containing products.
A related bill to the READ Act, H.R. 2030, was referred to the Subcommittee on Environment and the Economy in May.