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“You’re Going to Live a Long Life”

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A cancer survivor and writer says the “cancer community” lacks a cohesive political movement

By Matthew Dallek

June 15, 2009


 

 

This keynote address was delivered to The American Cancer Society: One Voice Against Cancer Lobby Day on June 8, 2009.

I never expected to write about cancer—I have a Ph.D. in American history, and mostly write about 20th century politics and culture. But in April 2007, I had stomach pains, so I saw a gastroenterologist, who said I was probably fine but ordered up a CT scan as a precaution. I did the scan a few days later and learned that I had appendicitis. The doctor instructed me to walk to a nearby emergency room in Washington and hand my films to a surgeon who would be waiting to meet with me. I told my parents: nothing to worry about; it’s just appendicitis.

The surgeon grabbed my films, and came into the room where I sat with my parents and told us that there were actually “two findings”—appendicitis, which I was fighting off, and a tennis-ball-size tumor in my pancreas. The surgeon couldn’t tell us what kind of tumor it was, but he said it was likely some type of pancreatic cancer. That was late on a Friday. On Monday, we consulted a second surgeon, who said it was definitely a tumor, and it’s either sarcoma (a death sentence); adenocarcinoma, with a five-year survival rate of five percent; or an islet-cell tumor. When my Mom said we should hope for an islet-cell, he said, yes, but there’s not much chemo or radiation to treat islet-cells—they will also kill you.

I couldn’t believe it. I was 37. I felt like a dead man walking. My grandparents had all lived into their late 70s and 80s and one had died at 94, and none of them had died from cancer. Deep in the back of my mind, I thought, This is absurd. It’s the 21st century, and modern medicine is telling me that I’m going to die before I turn 38 because doctors have few good tools to attack my tumor.

Well, I got really lucky. My parents’ neighbor called a doctor she knew, and he helped get us an appointment with the most experienced pancreatic cancer surgeon in the world, Dr. John Cameron at Johns Hopkins. Dr. Cameron spent a minute with my films, asked if I had lost lots of weight recently (the answer was “no”), and flat-out declared: “You’re going to live a long life.” My Mom, with my Dad right there, told Dr. Cameron: “I love you.”


To read Matthew Dallek’s Not Ready for Mt. Rushmore, his reconsideration of Ronald Reagan’s reputation, click here.


I had major surgery at Hopkins—I had an islet-cell tumor, which was encapsulated, and when islet-cells are removed before spreading, there is a very good chance of a cure. Dr. Cameron removed 40 percent of my pancreas, my spleen, and my appendix for good measure. While I was recuperating in the hospital for six nights after my surgery, I realized just how fortunate I had been. One of my neighbors down the hall was a man in his 50s, also recovering from pancreatic surgery. He routinely lapped me when I walked the corridors. I was so ill I could barely walk, yet every time he passed me, this man told me to keep going. He assured me that I’d be passing him very soon. I later learned that he had adenocarcinoma of the pancreas and that his doctors hadn’t been able to remove all of the cancer. I never learned his name, and I have no idea whether he’s even alive today. He was a nice man, incredibly brave, and he really encouraged me. So although I didn’t know him, I was inspired to tell my story in the hopes that in the coming years the investment in cancer research will be worthy of his courage and his humanity.

I want to make a few points about the barriers to securing federal funding and the opportunities for lobbying. First, I want to describe what in my view are the greatest hurdles standing in the way of federal funding for cancer research. The media, I think, do a very poor job of educating and serving the public about cancer issues. The media tend to cover cancer when it strikes a celebrity. The problem is that the coverage is all human interest, and sometimes assumes the character of a death watch. I heard a cable news anchor, who lost a sister-in-law to breast cancer, explain how her producers almost never wanted to do stories related to cancer unless a celebrity was involved. Thus, TV, radio, newspapers, and blogs all fail to focus on substantive issues in cancer research including the lack of funding for research, the dilemmas of making decisions after a diagnosis, new frontiers in cancer science, and so on.

Second, politicians don’t want to be associated with a failed war against an intractable disease. The wars on poverty, drugs, and illegal immigration have all been largely discredited as ineffectual. President Johnson’s Great Society programs helped lower the poverty rate from 22 percent to 12 percent during the 1960s, but critics have successfully portrayed them as little more than government handouts, which has had a chilling effect on similar campaigns. In the 1980s, First Lady Nancy Reagan’s admonishment to America’s youth to “just say no” to drugs became grist for late-night comedians.

At the same time, while they volunteer, do amazing work giving their time and pouring themselves into this life-and-death cause, generally speaking, cancer survivors, their families, and the medical community break into sub-groups focused on individual types of cancer. This has been crucial in making strides for, say, breast cancer research. But my sense is that unlike the AIDS community, which created a major movement to fight the virus, the “cancer community” lacks a cohesive political movement. When I attended a breast cancer symposium of the nation’s top researchers, surgeons, activists, and drug makers, somebody said the meeting was the first time they had all been in the same room. This was in October 2007.

Let me tick off some other barriers to progress that make it more difficult to secure a reliable stream of federal funding for cancer research. At Hopkins, Dr. Anirban Maitra, a brilliant, young pancreatic cancer scientist, told me that he devotes insane amounts of time applying for every grant under the sun. His lab just doesn’t have the resources it needs—it lacks the long-term financial stability—that is required to focus like a laser on his research. As a patient, that’s really depressing. Another incredibly smart and creative scientist there, Dr. Scott Kern, said that the National Institutes of Health—“the only large and renewable funding source for nearly all biomedical funding”—“rarely” funds research that “is truly novel and on the cutting edge” because the large review panels are unfamiliar with the proposed strategy and tend to fund projects that are “standard and well-defined,” where “the risk is low and so may be the impact of the work.” There is a “herd mentality” that undermines cancer research, and so a shift in outlook, approach, and culture is required in order to achieve breakthroughs.

The federal government spends billions to take humans into space and on building weapons—and an estimated $60 billion on the U.S. intelligence budget. Relatively speaking, cancer research is a low priority. The paltry level of funding creates intolerable situations. A friend of mine is enrolled in a vaccine trial at M.D. Anderson Cancer Center in Houston. Led by Dr. Elizabeth Mittendorf, the trial is designed to prevent a recurrence of breast cancer. But the trial is mostly dependent on private funding, so my friend is trying to raise tens of thousands of dollars on her own to keep the trial alive. That’s just crazy, and it’s wrong.

But I don’t want to leave you with the impression that the challenges are so massive that they can’t be overcome. I’m actually quite optimistic, and I want to tell you why and share a few brief thoughts on how you might lobby the media and elected officials and their staffs to deliver on the promise of greater federal funding.

Cancer research is an issue that resonates profoundly, without regard to party affiliation. It frightens, maims, and kills Democrats and Republicans alike. To cite just a few members of Congress who have cancer: Sen. Edward M. Kennedy (D-Mass.) has brain cancer, and Sen. Arlen Specter (R-Pa.) has twice survived Hodgkin’s disease. Sens. Saxby Chambliss (R-Ga.), Richard Shelby (R-Ala.), and Jeff Sessions (R-Ala.) share the distinction of having survived prostate cancer. In the House, Rep. Debbie Wasserman Schultz (D-Fla.) has undergone seven major surgeries in the past year because she not only had breast cancer but also has the BRCA-2 gene—putting her at increased risk for developing ovarian and other cancers. Her colleagues Sue Myrick (R-N.C.) and Jim Marshall (D-Ga.) are also among the cancer survivors serving in the House.

Think back to the 2008 presidential campaign. John Edwards’ wife, Elizabeth, announced that her breast cancer had spread to her bones. Obama’s mother died from ovarian cancer at age 53. Former New York City Mayor Rudy Giuliani is a prostate cancer survivor, while John McCain and Fred Thompson successfully battled skin cancer and lymphoma, respectively. Former Arkansas Gov. Mike Huckabee’s wife had spinal cancer when she was 19.

I’d come armed with those stories; when members of Congress and our president have a personal stake in something, they respond. After 9/11, there was a strong push to establish the Transportation Security Administration to provide federal protection at U.S. airports; members of Congress felt vulnerable because they fly commercial all the time. If they are reminded just how vulnerable they are to this disease, they will be more likely to respond favorably.

One popular refrain lawmakers have is that Issue X or Issue Y is not a partisan issue; it’s an “American issue.” When it comes to cancer research, it’s actually true. Conservative Republicans like Sen. Sam Brownback of Kansas, a melanoma survivor, strongly support cancer research. On the campaign trail in 2007, Brownback called cancer “the leading cause of fear in America today.” It’s a great line; steal it. In his February address to a joint session of Congress, President Obama talked about “seeking a cure for cancer in our time.” His budget proposal includes doubling the funding for cancer research over five years.

Congressional Republicans and Democrats alike should rush to support that reasonable goal and all of the benefits that might flow from achieving it. On ideological grounds, liberal Democrats should unanimously show their support for a federal institute that conducts research, distributes grants, and supports doctors whose clinical trials and laboratory research will save countless lives.

But Republicans should also be able to rally around the idea that the National Cancer Institute isn’t just a Big Government bureaucracy stifling economic innovation and the private enterprise system. On the contrary, NCI distributes grants to researchers employed at private medical institutions and leading hospitals. It makes the United States more competitive on a global scale in the areas of science, medicine, and cancer research. And it deepens a public-private partnership that, whatever its flaws, has led to innovation, strengthened the scientific marketplace of ideas, and helped the American people live healthier lives.

All of these arguments are worth making as you lobby for more funding. Find a few examples and show your audience that federal support for cancer research has actually already saved tens of thousands of lives. Connect NIH funding to drugs that can cure childhood leukemia, to colonoscopies, to the development of the CT scans that helped save my life. Thus, if politicians want to save lives, a doubling of the federal cancer research budget over five years is the minimum that ought to be done.

There’s an economic argument as well. Dr. Mittendorf of the Anderson Cancer Center says: “a permanent one percent reduction in mortality from cancer has a present value to current and future generations of Americans of nearly $500 billion. If a cure were feasible, that would be worth about $50 trillion.” Want to cut health care costs? Invest in cancer research. Want to ensure a stronger, healthier workforce? Invest in cancer research. Want to make strides against cancer as scientists have done against HIV/AIDs and heart disease in recent decades? Invest more money in the NCI. In short, remind congressional staff that there’s major bang for the buck in cancer research.

I’m a visiting scholar at the Bipartisan Policy Center. BPC was founded in 2007 by former Senate Majority Leaders Robert Dole, Tom Daschle, Howard Baker, and George Mitchell. It seeks to promote bipartisan policy solutions to energy, healthcare, and other national challenges, and some of my colleagues are working on a plan that Dole, Daschle, and Baker can all support to provide universal access to healthcare, which, of course, would save the lives of people with cancer. Some of you are Democrats, and some of you are Republicans or Independents. The issue of federal funding for cancer research is and must be a bipartisan issue that can win almost unanimous support from lawmakers.

In the end, a responsible national policy would make fighting the disease a policy priority because cancer causes far more deaths and anxiety in America than terrorism. A credible policy would call for a doubling of federal funding for cancer research with the twin goals of furthering basic research, as well as research on particular kinds of cancer. It would reverse the cuts to NCI’s budget in recent years.

When a close friend of mine started a job at The Washington Post, he looked around and concluded that resources were scarce, and that he was working in a dying industry. The world we need to envision is just the opposite of that one. This world has a massive pot of federal funding available for cancer researchers. Federal funding draws thousands of younger research scientists into the field, spurs creativity, and provides stability. It offers scientists the freedom to tackle one of the most complicated medical challenges known to humans. It will propel a sense within the profession of forward motion, of excitement, of the possibility of scientific progress. It can cement a belief that cancer research is among the hottest growth industries in the country. Maybe I’m being naïve. But I do think the moment is ripe, despite massive budget deficits: the president promised to double federal funding during the campaign. Congress is increasingly receptive to this cause—especially if you can make the economic argument. So keep up the pressure because if you do that, people will one day have a lot more hope and a lot less fear than they currently have whenever a doctor walks into a room and tells them, “Sorry, you have cancer.”


Matthew Dallek is an associate academic director at the University of California Washington Center. He is at work on a book about the Roosevelt administration and the politics and policy of civilian defense in World War II.


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