Once again, U.S. lawmakers are trying to create a national patient registry for mesothelioma. Doing so would allow physicians nationwide to share information that could help with the treatment and research of the disease.
Known as the Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021, the bill is named after a New York native who died in 2014 from mesothelioma. Co-sponsors of the bipartisan were U.S. Reps. Antonio Delgado (D-NY) and John Katko (R-NY). Congress initially introduced the bill in 2017.
Enhance research and treatment
Mesothelioma is brought on by inhaling asbestos dust and fibers, leading to this rare form of cancer that forms in the lungs and lining of the stomach. It has long puzzled the medical world, and a registry just may help.
Plans call for the establishment of the registry at the Centers for Disease Control and Prevention (CDC). If implemented, the national registry would collect – on a voluntary basis — health information on U.S. mesothelioma patients.
The primary goal of collecting this information is to enhance research and the registry would allow for:
- Determining demographic factors linked to the disease.
- Determining the prevalence of mesothelioma in the country.
- Facilitating research used to treat the disease.
- Developing and improving treatment and standards of care for patients.
- The sharing of information between U.S. doctors.
- Creating benchmarks to help clinics provide improved care for patients.
- Identifying the medical centers known for providing the best care of mesothelioma patients.
Each year, an estimated 3,000 Americans receive a mesothelioma diagnosis and nearly as many die. This disease is almost always fatal as more than half of the victims die within a year of diagnosis and only about 7% live at least five years.
A potential step toward helping victims
Researchers and physicians have long sought breakthroughs in treating and monitoring mesothelioma. The proposed national registry represents a potentially effective tool. With the nationwide sharing of crucial information on this disease, the health care industry may be able to take a bigger step toward helping mesothelioma victims.