Mesothelioma patient registry to be established under bipartisan Katko bill

U.S. Rep. John Katko (R-NY) on Nov. 4 sponsored a bipartisan bill to establish a national patient registry at the Centers for Disease Control and Prevention (CDC) for mesothelioma, a form of cancer linked to asbestos.

“By creating a national registry, my bill will help us take meaningful steps to understand, treat and eventually cure mesothelioma,” Rep. Katko said.

The registry created under the enacted Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021, H.R. 5869, which is cosponsored by U.S. Rep. Antonio Delgado (D-NY), would collect voluntary health information from mesothelioma patients, according to a bill summary provided by Rep. Katko’s office.

Information from the registry would be used to spur and improve research on mesothelioma via development and revision of standards of care and treatment for mesothelioma patients; sharing evidence-based information between physicians across the United States; implementing benchmarks to improve care in mesothelioma clinics; and identifying centers that provide the most beneficial care to patients, the summary says.

The bill, which Rep. Katko first introduced in 2015, is named in honor of Spano, a central New York native whose father worked for an elevator company where he was exposed to asbestos and then exposed it to the family through his body and clothing. Mary Jo Spano died after a four-year battle with mesothelioma and her sister, Meg Meccariello, an advocate for a National Mesothelioma Patient Registry, also died from mesothelioma in 2015.

Mesothelioma also has been linked to rescue, recovery and cleanup efforts at the former site of the World Trade Center in New York City, which collapsed following the Sept. 11, 2001 terrorist attacks, releasing a plume containing 400 tons of toxic pulverized asbestos and other hazardous materials across lower Manhattan that impacted an estimated 410,000 to 525,000 people, according to the Mesothelioma Center. 

“I’m reintroducing a bill inspired by a central New York native who lost her four-year battle with mesothelioma in 2014,” said Rep. Katko. “Sadly, many Americans, including hundreds of 9/11 first responders, are still suffering from this terrible disease.”

H.R. 5869 has been referred for consideration to the U.S. House Energy and Commerce Committee.