Explanation of the Modified Bill

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Why was the Pancreatic Cancer Research & Education Act modified?
When a bill is introduced in Congress, it typically goes through many modifications before it is enacted into law. The Pancreatic Cancer Action Network worked in good faith with our bill sponsors to make modifications to the bill and address concerns of members of Congress, third parties and those at the National Cancer Institute (NCI).

An example of an issue that was of concern to some members of Congress was the “disease-specific” nature of our legislation.  In response, we worked with the bill sponsors to expand the bill to include other deadly, or recalcitrant, cancers.  Recalcitrant cancers are defined in the bill as those cancers with a five-year relative survival rate of less than 50 percent.  The bill specifically requires that the initiatives outlined in the bill are first focused on pancreatic and lung cancers. NCI can then expand the program to other recalcitrant cancers at their discretion.

Terminology in the bill has also been modified.  For example, the strategic plan is now referred to as a “scientific framework.”  The title of the bill has also been changed to Recalcitrant Cancer Research Act to convey the expanded nature of the bill beyond just pancreatic cancer. Although some terminology may be different, and some items have been omitted from the current version, most importantly, the bill still accomplishes our goal to create a long-term plan, or scientific framework, for pancreatic cancer.  We should all take pride in the fact that our efforts will not only help pancreatic cancer, but other deadly cancers as well.

A Brief Summary of the Recalcitrant Cancer Research Act
The Recalcitrant Cancer Research Act requires the NCI to identify cancers like pancreatic cancer that have low survival rates.  Under the bill, the NCI will convene working groups to assist in developing scientific frameworks focused on individual recalcitrant cancers.  The frameworks will identify promising scientific advances, assess the sufficiency of qualified researchers working in relevant specialties, outline a plan to coordinate research, and include recommendations to advance research, including appropriate benchmarks for measuring progress.  The NCI may review and update the scientific frameworks as necessary, but is required to update each framework at least once, not later than five years after it is released.  In addition, the NCI is required to report information regarding actions taken on these scientific frameworks in the NIH biennial report to Congress.

The Recalcitrant Cancer Research Act is a measured and balanced approach that complements ongoing research efforts at the NCI.  The bill gives the NCI significant discretion to follow the best science, while encouraging the Institute to rigorously evaluate how existing efforts are, and are not, supporting progress in the prevention, detection, diagnosis, and treatment of recalcitrant cancers. 

Authorizations for Pancreatic Cancer
The original bill had authorizations for federal funding that could be appropriated to carry out the research initiatives outlined in the original bill.  Due to tight fiscal budgets, many members of Congress were opposed to anything that had potential dollars attached to it.  So, all authorizations were taken out of the bill.  However, this will not affect the NCI’s ability to develop a scientific framework, but does  make the creation of a scientific framework all that more important so that we can ensure that the limited federal research dollars are being spent in the most effective way possible to advance scientific progress in pancreatic cancer.

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