Cameron Sees No Need for National Mesothelioma Registry
July 25, 2019
Thoracic surgeon Dr. Robert Cameron, a longtime leader in the fight against pleural mesothelioma cancer, believes there is no benefit to establishing a government-funded national registry for the disease.
While many of his colleagues support the idea of creating the first National Mesothelioma Registry, Cameron feels the time, effort and money spent would be better used elsewhere in helping patients.
The National Institute of Occupational Safety and Health is currently conducting a National Mesothelioma Registry feasibility study for this rare and aggressive cancer.
As part of that feasibility study, NIOSH opened a public forum to obtain recommendations on a variety of topics. The comment period, which was expected to close July 8, was recently extended until Aug. 7.
“A Registry would not be an effective tool in 2019 and beyond for improving mesothelioma care,” Cameron posted on the forum. “The amount of effort and funding necessary for this alone cannot possibly justify this expenditure.”
Cameron Well Respected Internationally
As an internationally respected pioneer in the field, Cameron’s opinion is expected to carry considerable weight.
He is the director of thoracic surgery at the Ronald Reagan UCLA Medical Center in Los Angeles and scientific advisor for the innovative Pacific Mesothelioma Center, which opened in 2002 under his direction. It has the only nonprofit laboratory in the U.S. dedicated to in-house research of mesothelioma.
Through the years, Cameron has played a leading role in the development and refinement of the intricate, lung-sparing, pleurectomy and decortication surgery that has extended the lives of mesothelioma patients everywhere.
“As the very first person to propose a registry over 20 years ago, I was in favor of a registry when there was little information available,” he wrote. “However, several factors have changed.”
Cameron cited the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program and the National Cancer Database — sponsored jointly by the American College of Surgeons and the American Cancer Society — as better options.
“So an additional ‘registry,’ would be redundant, ill conceived, limited and expensive,” he wrote. “The data needed is collected now in electronic medical records which can be collected through these, far better than an independent registry.”
The $100,000 feasibility study was part of the $1.2 million Congress allocated to the Centers of Disease Control and Prevention for mesothelioma research in 2019.
The bulk of the $1.2 million goes to the National Mesothelioma Virtual Bank, a biospecimen registry based at the University of Pittsburgh. It is the only federally funded program designed exclusively for the research of mesothelioma.
Cameron believes the virtual bank, first established in 2006, has failed to live up to expectations, and the funding would be better spent elsewhere.
“This project has been used as funding support for a few ‘chosen,’ institutions with essentially almost nothing to show for it, and minimal data and specimens available for researchers,” Cameron said.
Many Believe a Registry Is Needed
Many in the mesothelioma community disagree with Cameron’s belief that a national registry would be of little benefit.
Advocates have been lobbying for a patient registry for several years.
“The advantages [of a registry] to the patient community include: Greater ability for therapeutic evaluation through clinical trial recruitment, enhanced ability to determine epidemiologic trends, capacity to gather occupational exposure information and mined medical records to enhance translational research, such as genetics, disease biomarkers and clinical research,” wrote Dr. Michael Becich, principal investigator for the National Mesothelioma Virtual Bank.
Congress currently funds several national health registries, including those for breast cancer, colon cancer, Alzheimer’s disease and cystic fibrosis.
“As a mesothelioma researcher, I strongly believe a ‘real time’ registry could be of great value,” wrote Dr. Steven Albelda, University of Pennsylvania School of Medicine. “It would be of use for epidemiological studies for tracking ‘hot spots.’”
Mesothelioma researchers Dr. Michele Carbone and Dr. Haining Yang of the University of Hawaii Cancer Center and thoracic surgeon Dr. Harvey Pass of Bellevue Hospital Center in New York City also support the registry.
“We need a U.S. mesothelioma registry to know exactly how many people develop mesothelioma and their demographics, and to coordinate diagnosis and treatment,” Carbone, Yang and Pass wrote.
Thoracic surgeon Dr. Raja Flores, mesothelioma specialist at Mount Sinai Hospital, also was in favor of national registry, but he has some of the same concerns as Cameron, including maintaining its integrity and avoiding any group using it for personal gain.
“This would be a great tool from an epidemiological perspective. It could help identifying modern day exposures [to asbestos],” Flores wrote. “But it would be disingenuous to inform patients with mesothelioma that this registry could save lives.”
Cameron, who declined an interview request with The Mesothelioma Center at Asbestos.com, was adamant on the question of who could best run a National Mesothelioma Registry.
“If a registry is planned, an independent data system should be used by a company or business entity that has nothing to do with treating mesothelioma patients, to avoid the biases and political agendas,” he wrote. “Again, I do not recommend this in 2019. Outreach network to reach ‘every,’ [mesothelioma] patient is not currently available, and would be virtually impossible to attain.”