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Under the bill’s current language, the National Cancer Institute must identify at least two recalcitrant cancers with five-year survival rates of less than 20 percent that are estimated to cause at least 30,000 American deaths each year. The two cancers that meet that definition are pancreatic and lung cancer, according to the Pancreatic Cancer Action Network. The five-year survival rate for lung cancer is 16 percent, while pancreatic cancer’s is 6 percent.
The institute would then be required to develop a scientific framework to guide research on each of the cancers. At the agency’s discretion, the program could be expanded to other recalcitrant cancers.
But Coburn says the National Institutes of Health, which the cancer institute is part of, should be able to make its own research decisions. In his letter to Senate Minority Leader Mitch McConnell, R-Ky., in which he asked to be consulted before the bill moves forward, the Oklahoma senator said research plans should be established when the NIH finds they are needed or when congressional oversight determines the agency’s work on an issue has been significantly lacking. The latter has not occurred in this instance, he said.
Coburn, who is a physician, said he especially disagrees with congressional requirements that the NIH maintain “an outdated disease-by-disease approach” when current biomedical research looks at broader questions across different disciplines.
“Congressional mandates will not serve to speed up the pace of science, but only hamstring the ability of NIH to respond to emerging breakthroughs,” he wrote.
NCI Director Harold Varmus also expressed concerns about the legislation’s focus, saying there’s a danger the bill would spur more advocacy groups to push Congress for new requirements. Instead, Varmus said, lawmakers should be focused on preventing the automatic spending sequester from taking effect, as well as concentrating on foreign affairs and the economy.
“A message in report language would be perfectly adequate to indicate to us that Congress is interested in hearing something about this topic, and we would comply with the report,” he said.
But Fleshman said her group has secured language on pancreatic cancer in past report language accompanying appropriations bills and wasn’t satisfied with the response.
In 2007, the network began having discussions about legislative options. Eshoo introduced a bill a year later that would have established a Pancreatic Cancer Initiative and required a strategic plan to advance pancreatic cancer research. That measure was reintroduced in the subsequent congresses and modified in September before advancing.
“The reality is, the NCI actually could do these things on their own. But because they weren’t happening on their own, you know, we decided that it was time to introduce legislation,” Fleshman said.
Rebecca Adams contributed to this report.