The United States may finally get a mesothelioma patient registry to help collect and track vital information about this deadly disease.
New York Congressman John Katko has reintroduced a bill he first brought before Congress six years ago. The Mary Jo Lawyer Spano Mesothelioma Patient Registry Act would establish the first national registry for asbestos cancer.
Registries like this exist for many other kinds of cancer. But malignant mesothelioma is very rare. This makes it even harder for doctors and scientists to access the information they need to understand and treat this cancer.
Experts from the CDC, the National Institute for Occupational Safety and Health (NIOSH), and several top US cancer centers have been calling for a mesothelioma patient registry for years. The new bill provides hope that it may actually happen this time.
Bill’s Namesake a Victim of the Legacy of Asbestos
The new mesothelioma patient registry bill is named for a New York woman who died of mesothelioma in 2014. Her sister, Meg Meccariello, died of the same rare cancer a year later.
Although the two women never worked with asbestos, they are believed to have been exposed to the toxin on the work clothes of their father, Charles Lawyer. He was likely exposed to asbestos in the elevator company where he worked. Charles Lawyer also died of mesothelioma.
The mesothelioma patient registry created by Rep. Katko’s legislation would collect voluntary health information from mesothelioma patients around the country. The information could then be used to support and enhance mesothelioma research.
“I’m reintroducing a bill inspired by a Central New York native who lost her four year battle with mesothelioma in 2014,” Rep. Katko said in a statement. “Sadly, many Americans, including hundreds of 9/11 first responders, are still suffering from this terrible disease. By creating a national registry, my bill will help us take meaningful steps to understand, treat, and eventually cure mesothelioma.”
The bill is co-sponsored by Katko’s fellow New York representatives, Antonio Delgado and Kathleen Rice.
How a Mesothelioma Patient Registry Could Help
Malignant mesothelioma is difficult to study because it is so rare. A national mesothelioma patient registry is a centralized place to hold patient information. It would house details about tumors, diagnosis, symptoms, and exposure history. Researchers and doctors could use the information to improve mesothelioma care.
Some cancer centers have started similar databases. The National Mesothelioma Virtual Bank at the Icahn School of Medicine at Mount Sinai is an example. It collects and saves mesothelioma tumor samples for research. But it is much smaller and more limited than a national database would be.
According to Rep. Katko’s office, a CDC-based national mesothelioma patient registry would help in several ways. It would:
- Support the development and revision of treatment standards
- Allow for the sharing of information between mesothelioma doctors
- Set up benchmarks for mesothelioma clinics to meet
The new registry will also allow patients to see which cancer centers 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. Almost all of them have lived or worked around asbestos.
Rep. Katko Reintroduces Bill to Create National Mesothelioma Patient Registry, November 5, 2021, Press release, Rep. Katko’s website, https://katko.house.gov/media-center/press-releases/rep-katko-reintroduces-bill-create-national-mesothelioma-patient
H.R. 5869 (IH) – Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021, https://www.govinfo.gov/app/details/BILLS-117hr5869ih