A PATIENT RESPONDS TO THE NCLAC

There is now pending in Congress the Cancer Act of 2002. This initiative, broad in scope, purports to increase the role of the federal government in the fight against cancer by essentially doubling the size of the National Cancer Institute. This doubling will be accomplished along lines outlined in a booklet, “Conquering Cancer; A National Battle Plan to Eradicate Cancer in Our Lifetime”. This is a noble sounding endeavor and, at first glance, anyone who voices any opposition might be thought of in the same light as one who hates Jesus, the American flag and mothers apple pie. Why then would anyone, a cancer patient in particular, find anything wrong with it? Is there, in fact, anything wrong with it and if so, what? This paper will attempt to discuss this in an equally proactive manner but from the point view of a patient with an as yet untreated form of cancer. I daresay that my passion to achieve a cure in my lifetime is at the very least equal to that of the members of the NCLAC, most of whom have never actually had cancer.

The above booklet is not about cancer nearly as much as it is about power and control and who is going to wield it. The interests of those in the “cancer business” are all too often of a nature quite different from those of a mere patient. One of the most tragic aspects of our federal medical structure is that far too often the patient is viewed as little more than a laboratory animal (see Time Magazine, April 22, 2002). The grandiose program now under discussion will do little to change that. One of the greatest oxymorons of our times is patient rights. Perhaps most lacking is the right to be treated with respect and the compassion that might inure to one stricken with a fatal disease. Cancer in our country today is one of the prominent elements in the gross national product with the patient the loser.

The committee is absolutely correct in one implication and for this we should all be grateful. There is implicit throughout the booklet the admission that the NCI has failed in its mission by bogging down in a hopeless morass of bureaucracy Clearly not what Nixon intended when the original cancer war was declared with the National Cancer Act of 1971. The simplistic logic is evidently that we will solve those problems inherent is an ineffective organization by creating a new, similar one to sit along side it. This new one cannot fail because we are going to see it literally swimming in money! A historian would immediately see the failure built into this logic. From such luminaries as Galileo forward, the breakthroughs have been achieved largely by individuals , in spite of rather than because of, the moneyed interests and prestige of the establishment. It has been said of contemporary times that there is nothing worthwhile going on in the world of science that is not being done by brilliant, innovative individuals, poorly funded and in cramped quarters with obsolete equipment. It is in this sort of milieu that the innovative find expression. Creative people, the very kind we will need to unlock the riddle of the cancer cure, are stifled in government research. These people will not tow the line and sing anybody’s song but their own. They rock boats and cause discomfort to the mediocre hence there is no place for them in a government research program. This is as good a time as any to comment on the word “research”. At a recent board meeting of a cancer association, I asked the question, “What does the word research mean to each of us?”. Rather than attempting to answer it, the moderator laid it aside until some future date. One thing that the word research does not even imply is creativity. The two are poles apart in result and in expression. Creativity gives us our breakthroughs. Research literally means “look again”. It continually sifts and refines the known to yield “conventional wisdom”. Conventional wisdom is a term coined by Harvard economist John K. Galbraith to describe that body of knowledge that is so accepted by peers in a field as to be regarded as truth. He also pointed out that conventional wisdom is usually wrong and programs based on conventional wisdom are doomed to fail.

It is interested to note how many times in the booklet the word “enable” is used. Perhaps this seemed more salable to the authors than “spend money for”. It has evidently not occurred to the sponsors that, rather than “bridging around” a roadblock, it just might be more effective to remove the roadblock, especially since it sustains itself off of tax money. Ironically, a lot of that tax money comes from people suffering from cancer! If faced with the prospect of having to do honest work, these “road blocking” bureaucrats might just become productive. It would seem to be worth a try. This brings us to the big “A” word that is just not spoken in this arena and that is accountability. The booklet deals with this in obscure rhetoric that promises nothing but words. We have not seen fit to demand it, hence we should not expect to get it. Americans have been lulled into this reverie of accepting the unacceptable until it has become a way of life. Any one of us would be thought strange who might expect a fair accounting of value received for our research dollars both in dollars and cents as well as a progression of cures for the over 100 forms of cancer. There are now approximately 3 Americans dying every 2 minutes from cancer. This is a staggering number that has gone up, not down, since we started pouring billions into a bureaucratic approach to the problem. And now, the unkindest cut of all, we see these politicians and self serving interests literally blackmailing all those on the scene to force their support in filling this big, new barrel with the foulest of pork. God help any Representative, Senator or others who do not get obediently onto the bandwagon without asking any questions. Should any representative of a pharmaceutical house dare to ask questions, it is quite likely that their newest drug, and perhaps the life saver of thousands, will never make it through the approval gauntlet. The end result of this is a paper shuffling horror that will push a cure for cancer far, far into the future and cost the lives of millions of Americans. The dying patients will not get one of those cushy political appointments.

Is there anything we can do to effect a solution to this nightmare problem? Yes, indeed, there are many things and they should be what congress seeks to do. Here are but a few.

First, reward creativity and innovation. One of the worst sections of the booklet in question is on page 9 where they attempt, incorrectly, to take credit for Gleevac. This remarkable drug was developed in Sweden by Dr Alex Matter of the Novartis company. He received the Alpert Foundation Scientific Prize award for his achievement which has virtually wiped out chronic myeloid leukemia (CML). We should likewise reward our brilliant innovators. Ignoring the alleviation of human suffering , since CML kills over 2,000 Americans each year, a cash award of $10,000,000.00 per success would be a paltry sum to pay for the cost benefits to the system. This could be announced as a reward for achievement. Cancer kills far more Americans each year than Osama Bin Laden and we have offered $25,000,000.00 for him. The mediocre non performers would, of course, be outraged at this and feel slighted but this is war!

Second, stop bashing the drug companies and help them save our people. Since this is largely where our best scientists are, create incentives for private industry to work. Politically speaking, this is absolutely incorrect. Practically speaking it would accomplish wonders of science in a very short time and the resources are already in place to begin immediately. The NCLAC conveniently ignores the millions of American who will die in the years required to build the brave new assortment of empires that is now under consideration.

Third, make it a crime, punishable by fine or imprisonment for any person at any level in the FDA/NCI to slow down or deny approval of any promising drugs or therapies based on jealousies, peer pressure or any self serving interests whatsoever. Dr. Harvey Wiley founded the FDA to protect the health of Americans and this seems to be a bit off track. In America at large, failing to give reasonable assistance to a dying person can result in manslaughter charges. Withholding help from medical science should be viewed in like manner. Along this line, the purchases of put or call stock options on a particular drug company in the weeks immediately prior to the announcement of approval or rejection of a promising drug should be closely monitored. Our present situation is an open invitation for the most despicable insider trading.

Fourth, empower the patients with some say in their clinical trial selection. It appears evident that there is an underlying strategy to place virtually all patients on clinical trials under the direct control of the federal government. By controlling the clinical trials the paper pushers will, in effect, be able to control how medicine in practiced in the cancer field. All patients are assumed to be stupid unless proven otherwise in our present system. Remove the trial system from the control of accountants, lawyers and statisticians and give it back to the scientists. A patient accorded the opportunity to make an information based selection is going to bring a mindset to the trial arena that has the potential to hasten the cure. The only participation that a patient has currently is more like that of a laboratory animal than a human being. Impassioned government speakers regularly sell the idea to desperate cancer patients that getting into a clinical trial is tantamount to a cure. The Helsinki accord on experimentation on human subjects seems to have been swept under the rug of medical history. Above all do not let a blind addiction to clinical trials alter the practice of medicine.

Fifth, bring scientific thought to bear. We have tended to accept that our only scientists are those working in government laboratories. This is simply not true and there are many fine scientific minds, including quite a number of Nobel laureates (who are themselves not immune to cancer) from all fields of scientific endeavor who could be utilized. Such scientific minds, independent of bureaucratic pressures could review a proposal on the basis of good scientific methodology in a fraction of the time that is presently wasted in redundancy. We have splendid scientists at universities presently at the mercy of the NCI for grant money to pursue their work. There are truly outstanding doctors actively engaged in cancer medicine. They must subjugate themselves to the mediocre to get any funds at all. Involve them in the decision making process instead of just making them subject to it.

Sixth, stop inflicting cancer on the population. There is absolutely no doubt that smoking causes cancer yet no legislator dare offend the tobacco lobby. New Zealand came up with a very innovative approach. Put an extra few dollars/pack on these death weeds and the smoker will either stop smoking or pay some of the costs that the nation must bear when he shows up in the cancer wards for treatment. Aerial spraying of known carcinogens continues all over the country under the auspices of the agriculture lobby. Various health agencies have expensive staffs tasked to find cancer “clusters”. Although many such instances of high density cancer occurrence have been reported by concerned citizens, there hasn’t been a cluster “found” since 1982. They don’t dare find one as the political consequences would be disastrous. Our current approach to the cancer epidemic may be likened to a faucet running into a stopped up sink. Imagine the ludicrous approach of sending for thousands of mops, with attendants, rather than trying first to turn off the faucet. This will be fine for the mop makers who will get rich without ever getting wet but it doesn’t even come close to a solution.

Seventh, involve the practicing physician in the fight. Many of these front line fighters feel totally disconnected from federal programs, since they are no more welcome to express opinions on how to wage the cancer war than are patients. The idea that the government knows best and the only intelligent life forms are on staff at the NCI has produced death as a harvest. There are many, many leeches feeding off the cancer epidemic whose personal agendas are best served by keeping the death rate high as a means to living the good life. They would be fools to allow a cure to ever reach the light of day. Practicing physicians, close to the patients they serve should have a higher standing on the battle field than, for example, cancer association executives. Give the physicians the tools to fight cancer. A program of long term, low interest rate loans to regional medical facilities should be implemented immediately to provide state of the art equipment, desperately needed but not now available. Economy of scale, inherent in the purchase of large numbers of machines will bring cost down. At the present, newer machines tend to be available in a comparatively small number of the larger facilities. This denies best available technology to the vast majority of cancer patients, especially lower income families and minorities. This is a shameful condition that is being perpetuated.

Eighth, consider how predictably inept bureaucracies are when it comes to solving state of the art scientific problems. A classic example is stealth technology which was the greatest breakthrough in radar technology since its inception. Few American ever realized how far this country had slipped in the defense race with the Soviet Union. Massive new Soviet surface to air missile defenses had rendered our chances of ever succeeding in a counter strike virtually nil. Something radically innovative was needed. Ultimately, the world saw this great innovation revealed when the first night of attacks by stealth bombers on Baghdad in the Gulf War moved it from being the worlds most heavily defended city to third world status. It is important to note how the two bureaucracies, the Russians and the Americans , figured into this development. It seems that some nine years prior to American interest in stealth, an obscure Russian scientist named Pyotr Ufimtsev wrote the first treatise on stealth techniques to defeat radar detection. It was so radical a concept and so unconventional that the Soviet scientific bureaucracy labeled it as being of no practical value. Had it not been for an entrenched scientific establishment (not too unlike our present NCI), Russia could have secured total domination of the worlds skies for decades. He was allowed to publish his paper in an obscure journal. An equally obscure but exceptional American radar specialist by the name of Denys Overholser at Lockheed picked up on this concept and, years later, in spite of rather than because of the American military research bureaucracy who at first rejected it, the F-117 ends up putting a smart bomb down the ventilator shaft in Baghdad. If not for the integrity and determination of one Kelly Johnson, a true hero of American aviation, the Americans would have likewise squelched the project. In those days, the Blue Suit establishment was throwing billions of good dollars after bad on the B-1 bomber (obsolete before it ever rolled out) and egos got easily bruised at the mere suggestion of any new ideas. There is absolutely no reason to think that the “scientists” at the NCI would react any different to a winning idea in the cancer war. Medical egos seem, if anything , to be more touchy than those in high positions in the military. They are, by their very nature, not worthy of trust in something as important as cancer, which has killed far more Americans than all our wars put together. They are not required to produce results and they cannot be fired for the lack of them. The death toll continues unabated.

One of the best examples of how Federal Agencies are usually overstaffed to the point of excess occurred early in President Reagan’s administration. The air traffic controllers decided to hold the country hostage with a threatened shut down of our air traffic system. When Reagan refused to yield to blackmail, 90% of the controllers went out on strike, a percentage that, presumably, would cripple any operation. The system kept right on going with the remaining 10% free to work. As one put it, “Workings conditions were actually better because we were rid of the mediocre, loafing trouble makers”. Funding for a lot of the above suggested programs seems viable by a reduction of present expenditures for a system that is clearly not working! If we learned nothing from the tragic Viet Nam experience it is that the Washington bureaucracy is incapable of winning a war. How soon we forget!

Be advised, members of congress, that if you do not stop this runaway freight train, you stand to kill millions of your fellow citizens and you just may be held accountable for your complicity. Give those of us in opposition the opportunity to voice our opinions. . Surely there is still alive in America the right of opposing views to be heard. What you have heard from the NCLAC so far appears to include the testimony of witnesses who have been carefully screened in order to be sure that they will give a politically correct supportive testimony. These are by no means criminals but, rather, decent , suffering people, desperate for a cure, who are willing to believe anything even halfway encouraging. These poor people will not be the ones who will get the cushy jobs that will allow them to live lives of ease and plenty. No, these people will just die while they are waiting for the cure that never comes and the fat cats will not even send flowers to the funerals.

At the present a vivid imagery comes to mind. A large group of cancer patients stand on the arena floor before the lions are turned loose to devour them. They look to the imperial box where they see only contempt. Before the games begin, they look to the box and shout “Hail, NCICZAR, we who are about to die salute you”. Afterwards the arena is cleared, monetary obligations are settled and the talk turns with enthusiasm to tomorrows games. Have I put the matter too strongly? Have you, personally, dear reader, ever known what it is like to have cancer?

We can do better than this, my dear friends. We must do better than this! Do not allow yourselves to be blackmailed into unthoughted action that may worsen what is already a national disgrace. There is a better way, it just doesn’t cost as much. This should be pleasant to the taxpayers since it only inconveniences those who desire to live off the disease.

I suggest that any interested person reading this get a copy of the NCLAC booklet by emailing rkirch@cancer.org. Read the book with two questions in mind; 1) Who is really getting helped and, 2) who is being fooled? The answers will surprise you.