On July 29, 2015, U.S. Rep. John Katko, R-N.Y. introduced H.R. 3284, a bipartisan bill to create a mesothelioma patient registry. This bill is named the Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015 in honor of Mary Jo Lawyer-Spano, who along with her father contracted mesothelioma and died from its effects. Her sister, Meg Meccariello, is continuing to battle the disease.
Mesothelioma awareness has increased over the past few years. With the slow incubation of the disease – often many decades from exposure – people are now facing mesothelioma diagnoses from exposures in the 1950s through 70s. These are primarily baby boomers and their parents, a large group of people, though only about 3,000 people a year are diagnosed. With such a low incidence of this disease, this has not been addressed until now.
How Will This Help?
There are a number of uses proposed for this registry. Among those are to:
– enhance and expand infrastructure and activities for tracking the epidemiology of mesothelioma patients
– collect, consolidate, and report on health information on patients diagnosed with mesothelioma with respect to–
• treatment outcomes, including patient longevity; and
• the number of patients receiving treatment for mesothelioma by hospital
– to better describe the incidence and prevalence of mesothelioma in the United States
– to facilitate further research on mesothelioma
– to examine factors, such as environmental and occupational factors, that may be associated with mesothelioma
– to better outline key demographic factors, such as age, race or etnicity, gender, and family history
– to make the information in the registry anonymously available to the public to enhance research on, and prevention and treatment of, mesothelioma.
Congressional co-sponsors of this bill are U.S. Reps Jan Schakowsky, D-Ill, Chris Collins, R-N.Y., Pete King, R-N.Y., Joe Kennedy III, D-Mass., Betty McCollum, D-Minn., and Leonard Lance, R-N.J.
On the day the bill was introduced, it was referred to committee and has only a 3% prognosis of being enacted. Interested parties should contact their local representatives to increase the chances of this worthwhile registry becoming a reality.