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November 4th, 2007 · 1 Comment

The Real Enemy—by Steve Kirsch

Before running Daryn Kagan and my cancer series, I had written a post about rare cancers. I shared the story about Silicon Valley billionaire Steve Kirsch’s battle with a rare blood cancer, Waldenstrom Macroglobulinemia.I am so glad that Steve saw the post and reached out.   He said I could share his email:

“i see my story is on the front page your website. thanks for
the press. it is so sad when you look at the numbers. 224 people die from
terrorism each year. government spents $100B per year on that.
500,000 people die from cancer. Government spends $5B per year.
go figure.and then they pass a bill to authorize $250 million for blood cancers
like mine. But then they don’t appropriate the funds!!!!!!!!!

I want Steve to tell you more directly about his fight for more funding and the absolute, mind-boggling rationale by the government to fund or not fund when it comes to saving…or in our case…ignoring lives at stake: I asked Steve if he would share directly with you some of those thoughts. The real enemy is not the terrorist abroad. According to Steve, it’s the terror not dealt with right here at home:

Terrorists are just a distraction. The real enemy is government stupidity. Here’s how I know that. Last week, I was diagnosed with a rare incurable blood cancer called Waldenstrom’s Macroglobulinemia (WM).  Because it kills, on average, only about 1,200 people per year, it’s considered an orphan disease so it gets very little money and attention from the government and drug companies. It’s basically a death sentence. I have a little more than 5 years to live.

As I learned more about my disease, some of the most significant things I learned were:

  • the lifetime risk of developing cancer is 1 in 2 for men and 1 in 3 for women
  • there is a 25% chance that you will die from cancer
  • 500,000 people die from cancer each year
  • the government spends about $5 billion a year on research; $114M of which is spent on non-Hodgkin’s lymphomas collectively, but zero dollars are spent on WM specifically.
  • Only 8% of the research proposals to the NIH get funding. Researchers spend about 30% of their time writing grant proposals. Since 92% are turned down, this is an enormous waste of our most precious medical talent. Even prominent, highly decorated researchers such as Ken Anderson at Harvard, only have 8% of their research proposals granted.
  • our society spends $200 billion a year on medical care for cancer victims (40 times the amount we spend on prevention)
  • Gleevec is proof that we now have the technology to create real “wonder drugs” that cure cancers that were previously untreatable
  • the researchers on my particular cancer said that they could efficiently deploy more funds to accelerate their research. They are confident that they can create a “wonder drug” for my disease. They just lack the funds. They get zero dollars from the government now.
  • the research dollars for cancer have been going down every year in real dollars for several years now
  • cancer research has never been a national priority

To put the cancer numbers in perspective, a disease called “terrorism” in the US kills, on average, about 224 people per year. Approximately 0 people per year are killed by terrorists from Iraq. At that size, it should be categorized like my disease as an orphan disease and it should get no government funding at all. Yet, we spend over $100 billion a year fighting it in Iraq alone. Not only that, but every year, four times as many lives are lost fighting it, than are directly killed by the disease itself! In short, we’ve save more lives by not fighting it at all. Even worse is that the more money we spend fighting this disease, the more prevalent it becomes and the more people unnecessarily lose their lives!

(more from Steve tomorrow) Thank you, bloggers, for staying with me. Thank you for posting, responding, being angry and by doing so, making a difference. Now go to The Poll and Vote!

Tags: Carol Reports

1 response so far ↓

  • 1 Language_and_Mind // Nov 7, 2007 at 9:07 am

    The Real Enemy. It is difficult to disagree—there is plenty of stupidity in our government decision making processes, especially in Washington (where, coincidentally, I live and work). But stupidity is not our only enemy: there is also, for example, plenty of irrationality, and there are all kinds of competing interests—some extremely powerful—vying for the same pieces of the federal pie. I wonder what practical steps we can take to solve the basic and pressing problems Carol and Steve spell out here? Two basic questions link all these thorny problems:

    Question (1) is: why do we not more aggressively fund research on orphan cancers which seem collectively to account for the great majority (2/3) of new US cases?

    Question (2) is: why do we not simply fund all cancer research more robustly?

    Carol’s poll question implies one attractive answer to question (1), which is to re-divide the existing pie: re-allocate cancer funding so that orphan cancer research receives more money and non-orphan research less. The upside to this approach is that it is practical (i.e. do-able) because it makes use of already available federal research dollars, and aims urgently needed research at under-funded or entirely neglected cancers; the downside, though, is that it cannibalizes funding for non-orphan cancers, while also perhaps alienating non-orphan researchers and patients, an important part of the larger cancer community. Without some other special funding vehicle for orphan research (about which more below), it may be necessary to resort to a question (2) approach: increase the size of the overall pie with new money, so as to fund all cancer work more robustly.

    The easy answer to “why don’t we do this?” is that new money is very hard to secure in Washington and so the size of the NIH pie right now is essentially fixed. Congress and the President today only allocate $5 Billion annually to the NIH for cancer research. The NIH, in turn, funds certain research proposals, which amount, as Steve observes, to less than 8% of all cancer research proposals NIH receives. One might assume that the NIH separates out from the applicant pool all meritorious proposals and funds those, leaving unfunded just the unmeritorious proposals (the best of possible worlds). But that would be a mistaken assumption. In fact, NIH expert review teams evaluate all submitted proposals, and then rank all and only meritorious proposals, returning all others to their authors with criticism if not suggestions for possible revisions and later re-submission. Once NIH learns how much funding the Congress and the President are going to provide, it allocates funds to as many of the ranked proposals as possible, beginning with the top-ranked ones and moving on down the list, until it runs out of money. This is what it means to say that today funding is at a point where fewer than 8% of (meritorious) proposals receive federal funds.

    Of course, NIH uses this kind of process for research proposals in *all* of its constituent institutes, not just the National Cancer Institute, but others such as the National Institute of Allergy & Infectious Disease, the National Heart, Lung & Blood Institute, and so on. The bad news about all NIH funding, according to Dr. Joseph Loscalzo, writing in the New England Journal of Medicine (April 20, 2006), is that the 2007 funding year will be the first in which the inflation-adjusted overall NIH budget (of $28.6 billion) will have actually *declined* since 1970. This decline, says Dr. Loscalzo and many others, has had (and will continue to have) devastating effects on our whole health-care research infrastructure. The net loss of funding not only impedes scientific discovery, but demoralizes all researchers, while interfering with the training of new generations of scientists, and motivating many to abandon pure academic research in biomedical disciplines in favor of either other disciplines or the commercial blandishments and narrow agendas of multinational pharmaceutical companies, biotech start-ups and the like.

    I have seen this phenomenon first-hand again and again. It isn’t pretty. Just a year ago, a member of my own extended family left a full-time post at the Massachusetts General Hospital and Harvard Medical School to join one of the world’s largest pharmaceutical companies (headquartered abroad). This bleak turn of events is potentially disastrous for the laboratory-based and highly productive part of our academic and health-care infrastructure. It undermines, as Steve astutely points out, large numbers of the best and brightest biomedical and scientific minds we have educated and nurtured nationwide in all our teaching hospitals, medical schools and university biomedical research labs. It also threatens to impede the in-flow to American universities of promising students from abroad—the brain-drain—from which America and the world have benefited for more than a century.

    Given this worrisome reality, most impartial observers would probably think increased funding is a no-brainer. But is it? To find out, it may help to see the NIH budget in context.

    Question (3) is: where does the NIH cancer budget fit within the larger federal budget and the US economy?

    Does the world’s richest and most technically proficient nation have the financial resources, say, to double or triple, the $5 Billion NIH budget for cancer research? To get a sense of the relative size of the cancer budget, it helps to see it as an element of the overall federal budget: for 2007, the US federal budget is $2.8 Trillion. (This is a little less than 20% of the US gross national product for 2006 which was $13.25 Trillion. Those who worry that we are no longer an economic superpower may be reassured to know that, using 2006 data, the US economy is still $1 Trillion larger than the combined gross national products of the next four largest economies: Japan at $4.4 Trillion, Germany at $2.9 Trillion; China at $2.6 Trillion; and Britain at $2.4 Trillion). So the overall NIH budget of $28.6 billion for 2007 is just about 1% of the federal budget, and the total cancer research budget of $5 billion is about 1/5 of that. So in the starkest terms, one could say we are spending only 1/5 of 1% of the federal budget on cancer, which kills—as Steve observes—500,000 of our fellow Americans (or 1/6 of one-percent of our whole population of 300 million) each year. If you are like me and, I think, Carol and Steve, you may be asking What’s wrong with this picture?

    Question (4): If we expand the NIH cancer budget, can we get the money to do that from other budget items within the federal budget?

    What part of the budget can be sacrificed? Steve presents a compelling picture of the cost of the war in Iraq, and the “war on terror”. He quite reasonably suggests—and in appropriately blunt terms—that those monies are not well spent, and represent a hideous waste of human lives and national resources. To add more data to Steve’s war portrait, the Federation of American Scientists has noted that, with the budget supplemental of May 25, 2007, Congress had appropriated $610 billion since 9/11 for military operations in Afghanistan and Iraq, counter-terrorism, foreign aid, and sundry related monies for base security, embassies, Veterans’ Affairs, etc. And President Bush recently set out to secure an additional $192 billion to fund the wars through fiscal 2008. How can we reconcile—in a way that seems rational—our under-commitment of resources to cancer research and our extreme over-commitment of resources to a mistaken military undertaking overseas (one that is even condemned by many of our most respected military leaders)? Dr. Loscalzo paints the same picture in a different, but equally disturbing, light: federal spending now totals $1600 per capita for national defense, but only $97 per capita for biomedical research.

    Likewise, it might be possible to re-prioritize so-called “pork” spending: What is federal “pork”? For the uninitiated, the so-called “bridge to nowhere” is emblematic of pork at its worst. This project—sponsored by Senator Ted Stevens of Alaska—was designed to link the Alaskan island of Gravina (population 50) and the city if Ketchikan (population 8,000) with a bridge costing $223 million. The bridge—which would be longer than the Golden Gate, and 80 feet taller than the Brooklyn Bridge—would replace the current ferry service which runs every 15 minutes in the Summer and can convey Gravina residents to the Ketchikan Hospital in five minutes. According to its annual “Pig Book”, Citizens Against Government Waste reports that Congress spent $29 billion on pork projects in 2006, and has amassed a total pork outlay since 1991 of $252 billion.

    These many ill-conceived expenditures appear to be attractive targets for budget reform, but the prospective problem of making (or even attempting to make) substantive changes in military or pork spending is that one will face fierce opposition from those with entrenched interests in the status quo. Senator Stevens, for example, is a senior and very powerful member of the Senate, who is chair of the Senate Appropriations Committee. There are also many corporate and institutional interests that benefit from the present budget configuration. And, yes, they will labor hard to maintain “their” benefits. Any battle over resources between, say, military contractors (picture Boeing, Northrup-Grumman, Lockheed Martin) on the one hand, and academic research hospitals and medical schools (picture UCSF, UCLA, Johns-Hopkins, Harvard) would be ugly and probably one-sided. The same is true, of course, for those who benefit from other corners of the federal budget. Well-funded lobbyists and lawyers in Washington, DC make careers of influencing members of Congress. And, as the saying goes, money talks or, in one iconic folksinger’s rendition: “money doesn’t talk, it swears.”

    In addition, military and quasi-military subjects such as terrorism tend to be Hot Button issues, saturated with emotion. For those who lost loved ones, friends or colleagues in the World Trade Center and the Pentagon on 9/11, and for others who simply witnessed the tragedy, the loss of life provides powerful motivation for counter-terrorism expenditures. And the perceived continuing danger posed by anti-American fanatics represents a clear and present danger. Moreover, the metric of mortality caused by terror (and the fear of prospective terror) may not square with that of a disease whose mortality toll is amenable to measurement in precise annual totals and compelling statistical analyses and forecasts. To be sure, the total fatalities from, for example, the embassy bombings in Africa, the train bombings in Spain and Britain, and the hotel bombings in Bali, pale when compared to cancer deaths in the US alone. But the prospective risks of a mega-sized terrorist event on US soil are, to those who are committed to this way of thinking, very grave. In their thinking, for example, a dirty bomb in Washington, DC or any major US city, or a sophisticated attack on the nation’s energy or financial infrastructure or the like, would have truly devastating effects on the US and, perhaps, the world economy and more. To many if not most level-headed citizens, our war and terrorism-related expenditures seem disproportionate and unjustified, if not irrational, at present. But the fears of renewed attacks on the US and other Western politico-economic targets are also real for many among us, and not entirely without foundation. One challenge among many that the cancer community faces is how to get Congress and the President to revise budget priorities so as to enhance federal cancer funding (while perhaps also reducing waste if not some measure of national stupidity). But there may be other ways to increase cancer research funding, ways that involve finding non-federal money.

    Question (5): If we increase the size of the budget available to cancer researchers, can monies to do this be found outside the federal budget?

    Let’s do what we can to unlock more federal funds for cancer research by re-prioritizing existing pork, military and other unnecessary budget items. But in the meantime, maybe we can think more creatively, think outside the (federal budget) box, as it were. Remembering that the color of the money is the same, regardless of whether it comes from NIH or elsewhere, here are some ideas for alternative funding of cancer researchers:

    (a) Wealthy Forward-Thinking States – Since California often leads the way for the nation on initiatives of all kinds, it was not entirely surprising that it side-stepped major federal obstacles to funding stem-cell research by launching its own $3 billion program. This is serious money, particularly in view of the fact that the current NIH cancer budget is only $5 billion. As the US state with the most powerful economy by far, and a large and well-developed research infrastructure, California is well-positioned for such challenges. It may also be able to help fund cancer researchers.

    (b) Wealthy Forward-Thinking Individuals and Foundations– America’s cup runneth over when it comes to accomplished wealthy individuals, many of whom have a philanthropic streak. One thinks, for example, of the Andrew Groves, the Sandy Weils, and the David Geffens, to say nothing of the work done by the Howard Hughes Medical Institute, the Rockefeller Foundation, the Gates Foundation and so many others. While many of these individuals and organizations are already deeply, or even primarily, involved in biomedical research, they may well be persuaded to open their purse-strings more fully, or juggle their priorities, in the belief that more is better in the world of cancer research.

    (c) Overseas Philanthropists – In an age when American high-tech, biomedical and university research continues to be the envy of the world, wealthy foreign individuals may well take a sincere interest in funding cancer research in the United States. Some already make contributions, and many already come to US hospitals for treatment. America has long been seen as the R & D lab for the world, and when it comes to cancer, which knows no international boundaries, a concern for the common interests of mankind may well motivate overseas benefactors to contribute substantially to the noble cause of finding universally applicable cures for orphan and non-orphan cancers alike.

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