Congress' Insult to Randy Pausch's Legacy

Bob Donaldson, Post-Gazette / Newscom Amanda Rivkin/AFP/Getty One year after the death of "Last Lecture" speaker Randy Pausch, his cause-increased funding for pancreatic cancer-is mostly abandoned.

Today is the first anniversary of Randy Pausch's death at the age of 47. Pausch, a computer scientist at Carnegie Mellon University skyrocketed to fame after his so-called "Last Lecture"-a rousing talk in which he encouraged his three young children to never give up their childhood dreams and did Rocky-style pushups after showing a picture of the 10 tumors on his liver that had metastasized from pancreatic cancer. The lecture was viewed by millions on YouTube, turned into a bestselling book, and earned Pausch an entry on Time's "100 Most Influential People" of 2008. He certainly deserved the recognition, but, by transforming Pausch into a motivational speaker, the media has overlooked the facet of his life and legacy to which he devoted himself in his dying days: Beyond simply serving as an inspiration to Americans confronted with imminent death, Pausch turned himself into an impassioned advocate and a cultural icon on behalf of pancreatic cancer research.

Beyond simply serving as an inspiration to Americans confronted with imminent death, Pausch turned himself into an impassioned advocate and a cultural icon on behalf of pancreatic cancer research.

Before his death, Pausch appeared in public service announcements sponsored by leading advocacy organizations, including the Pancreatic Cancer Action Network and the Lustgarten Foundation. He used his book to raise awareness and lobby for resources. In March of last year, Pausch even left his hospital bed (he had congestive heart failure and renal failure) to appear before a House subcommittee to urge lawmakers to increase federal funding for pancreatic cancer research, showing them a photo of his soon-to-be-widowed wife, Jai, and calling his disease "absolutely ruthless."

Members of Congress, however, have thus far resisted Pausch's request for new funds for pancreatic cancer research. When Health and Human Services Secretary Kathleen Sebelius recently told lawmakers that President Obama wanted to double federal funding for cancer research over eight years, Appropriations Committee Chairman David Obey (D-WI) said, "This committee will not follow the administration's lead on that one." According to Julie Fleshman, president and CEO of the Pancreatic Cancer Action Network, "The investment in pancreatic cancer research has grown ... far less than what Dr. Pausch requested."

The problem extends far beyond the politicians who hold sway over the nation's purse strings. A "herd mentality" undermines the grant-making process, says Dr. Scott Kern, professor of oncology and pathology at Johns Hopkins University. "Congress and the NCI [National Cancer Institute] both hunger for popularity, [and] a small handful of popular cancers get more than their share of the research dollars. This leads to crowds of scientists looking in the dark" at the same handful of cancers all sitting beneath the "same [few] lampposts." Pancreatic cancer research has long been a medical orphan, partly because it's so deadly that there are few survivors to raise awareness. So, as funding for all cancer research has dried up in recent years, it's been especially hard hit.

"Instead of piling immense amounts of attention onto the same few popular subjects, [Congress and the National Institute of Health] should ensure a diversity of subjects," Kern says. After all, "if one wants to understand the severity of cancer, one could find no better system than to look into pancreatic cancer for a few clues."