It may soon be easier for mesothelioma patients to pinpoint the best treatment facilities and to access the highest level of care thanks to new legislation now making its way through Congress. The new bill is also likely to garner more attention for mesothelioma from the medical community, the press, and the public.
The Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2015 will establish an official registry to collect and track patient and treatment data related to the mesothelioma. While this kind of information is gathered for many other types of cancer, this will be the first time it has been collected for 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,” stated Representative John Katko of New York, who introduced the bill.
The New York woman for whom the bill is named died late last year after a four-year battle with mesothelioma. Now her sister, Elizabeth Lawyer, also suffers from the disease. The two are believed to have been exposed to asbestos on the work clothes of their father, who was likely exposed to asbestos in the elevator company where he worked. Charles Lawyer also died of mesothelioma.
According to Representative Katko’s office, information from the newly-established mesothelioma registry will “facilitate and enhance research on mesothelioma” by supporting the development and revision of treatment standards, the sharing of information between mesothelioma doctors, and the implementation of benchmarks for mesothelioma clinics.
It will also allow patients to more easily determine what cancer centers have been shown to provide the best care for mesothelioma patients. All of these things are currently more difficult for mesothelioma patients than they are for many other types of cancer patients because the disease is so rare and no registry exists. Only about 3,000 people are diagnosed with mesothelioma in the US each year.
News Release, “Katko Introduces Bipartisan Legislation to Create National Mesothelioma Patient Registry”, July 29, 2015, Katko website