A bill that started as an earmark for pancreatic cancer research has made it through the House of Representatives.
Now known as the Recalcitrant Cancer Research Act, H.R.733, the measure would mandate NCI to develop scientific frameworks to conduct and support research on cancers with a five-year survival rate of less than 50 percent.
The Sept. 19 House approval came one week after the Subcommittee on Health amended the bill to eliminate exclusive focus on pancreatic cancer (The Cancer Letter, Sept. 14). A total of 294 house members co-sponsored the measure.
An identical Senate version, S.3560, was approved the same day by the Senate Health, Education, Labor, and Pensions Committee. Altogether, 21 senators have signed on to the amended bill.
If the bill passes both chambers, the director of the NCI would have to identify, within the first six months, two “recalcitrant” cancers with a five-year survival rate of less than 20 percent. These cancers have to be estimated to cause the death of at least 30,000 people per year in the U.S.
This means, despite amendments, the bill mandates that NCI give priority status to pancreatic cancer and lung cancer. The survival rates of these diseases are 6 percent and 16 percent, respectively.
Such measures targeting specific diseases are “a slippery slope,” said NCI Director Harold Varmus at the National Press Club in Washington, D.C., on Sept. 25.
“Pancreatic cancer [is a] terrible problem, but it’s not the only devastating cancer that we have to deal with,” he said. “Comparisons with other cancers are very risky because I don’t want to look a patient dying of breast cancer in the eye and say, ‘Yeah, you have one of the good cancers.’
“There’s no such thing—cancer is a bad disease wherever it takes its toll.
“The directives in the bill do not enable us to do something we would not ordinarily do,” he added. “In fact, we already have a group at the NCI that’s undertaking what I consider to be a useful exercise— that is, looking back and seeing what we’ve achieved in pancreatic cancer over the last decade, and scanning horizon for things that we may not have been taking advantage of, just to be sure that everything is probed.”
“One thing that I would very much object to that was part of the original bill is an effort to take decision-making about grant-making out of the hands of the NCI and putting it in the hands of advocacy groups, not just because inherently it’s wrong, but very quickly, every other advocacy group would say, ‘I want that too!’ and then we have chaos.”
A product of aggressive lobbying by the Pancreatic Cancer Action Network, the old version of the bill sought to directly authorize $887.8 million in NCI funds for pancreatic cancer research. If passed, it would reduce NCI’s role to that of a minor player and severely undermine the institute’s peer review system (The Cancer Letter, Aug. 3, Aug. 10).
Many in the cancer research community were alarmed by the ramifications, and waged a letter-writing campaign in opposition to the original legislation. The Subcommittee on Health promptly rewrote the bill, returning control of the budget and research process to NCI, requiring only regular progress reports besides the mandatory identification of lethal cancers.
“The passage of this bill is a critical step towards reaching our goal to double the pancreatic cancer survival rate by 2020,” said PanCAN CEO Julie Fleshman. “Our hope is that the Senate will pass the bill quickly and that President Obama signs it into law, so the NCI can begin implementing an actionable research plan to accelerate progress and improve outcomes for the disease.”
At his press club appearance Sept. 25, Varmus said the progress that has been made over the past 30 to 40 years against pancreatic cancer is “considerable,” but these advances are confined, so far, to understanding the disease.
“It’s a particularly difficult disease to study compared to breast cancer, because of certain attributes of the disease that haven’t been sell-ons or mouse models until the last decade or so,” he said.“The number of people who are now invested in working on pancreatic cancer has enlarged dramatically—the NCI is spending three times as much on pancreatic cancer,” he said. “So, it is a change in environment, but we have to acknowledge that we made almost no progress in early diagnosis or therapy.
“We have a lot of genetic information on the disease, including the incredibly critical piece of information we’ve had for 30 years,” said Varmus. “Virtually every case of pancreatic cancer has a mutation in the KRAS gene.
“If we made some advance against treating cancers with that mutation, whether it is through studying the lung or the breast or the colon, a set of results would be applicable to pancreatic cancer, too, which is a way of saying that not everything that benefits cancer X comes from the study of cancer X, and that’s an important thing to remember.”