Date: May 28, 2006
by Chaya Venkat
The theme of my recent talk at the UK CLL Forum Presentation was that while researchers and experts are indeed learning a great deal about CLL, what makes it tick at the molecular level, how best to treat it, what prognostic indicators to use to make therapy decisions, what are the risk factors, etc., this precious life saving information is not trickling down fast enough to the local level. A small subset of our patient community gets the benefit of the hard won wisdom from cutting edge research — patients who are fortunate and able to go to experts at world class cancer centers, or patients who are just plain lucky and find a doctor that bothers to keep up with the latest information. For the rest of us the story is a whole lot bleaker. We are getting short changed on all fronts. Access to a knowledgeable and up-to-date physician is one of the important prognostic indicators of managing your CLL over the long haul.
Most CLL patients in the United States are diagnosed and treated by local oncologists. Even though most insurance companies cover the cost of a second or third opinion, the majority of patients do not use this available resource. Why is that? Perhaps the patient has unbounded faith in his or her particular doctor, or perhaps he is afraid of offending the local guy by asking to get a second opinion. Many patients feel intimidated in the doctor-patient relationship and of course the mere mention of a cancer diagnosis can knock the stuffing out of them. Bravado is checked at the door, and the typical patient meekly submits without any effort at taking charge. One patient who received less than optimal therapy from her local guy, and who happened to live within a 100 miles of the world class Ohio State University and Dr, John Byrd’s CLL group, told me that she did not want to spring for the cost of gasoline for the 100 mile drive each way. I wonder, how much she did spend each month on going out to eat, lattes at the local Starbucks, or in getting her hair or nails done at the beauty parlor? People, get your priorities right!
Let us take a typical case, an oncologist in a small town or rural area, some one who went to medical school about 20 years ago, long before the era of “smart” monoclonal drugs such as Rituxan and Campath. We will assume this individual is a hard working, well-intentioned practitioner who is trying to cope with ever increasing work load and complexity. Perhaps this physician belongs to an HMO and must satisfy the requirements of that organization in terms of costs and efficiency. He takes care of dozens of different types of cancer. Majority of his patients have the “big” cancers, such as breast cancer, prostate cancer, lung cancer, colorectal cancer, etc. He may even have a smattering of patients with blood cancers, such as the acute leukemias and lymphomas. Each and every one of these cancers is a different beast, each with its own explosion of new research findings. How many CLL cases is he likely to see in a year? I doubt most local guys see more than one or two a year. Even hematologists who specialize in blood cancers only may see no more than a handful of CLL cases in as many years.
Our typical physician faces constraints at every turn. He lives in an era of information overload. There are not enough hours in the day for him to bone up on all the stuff he needs to know. He must be efficient in his time management, he cannot spare more than the mandated 15 minutes for each patient. He must be cost conscious — the HMO is not going to react kindly to diagnostic testing that is a necessary part of cutting edge prognostics (and costs a pretty penny). His medical malpractice insurance is going through the roof and he might think the only way to protect himself is to resoirt to the slam dunk “gold standard” conventional therapies. No one gets sued for being boring or conventional; blazing a new path can be dangerous, it may hurt. If he spends any time worrying about his patients over and beyond the required 15 minute consultation, chances are he will spend it worrying about his “really sick” cases, not about his rare CLL patient. After all, CLL is the good cancer to have, right? He might believe that CLL patients do not die of CLLand that they are more likely to get run over by a truck? How many of us have heard these ghastly conventional un-truths?
Continuing Medical Education (CME) is supposed to be the mechanism for bringing local physicians up to speed and keep them informed about new research findings. One can see thousands of oncologists and hematologists wandering around like lost souls at the annual ASCO (American Society of Clinical Oncology) and ASH (American Society of Hematology) convention centers trying to make sense out of literally hundreds of presentations and even more numerous poster sessions, all of them thick and heavy with jargon. You can hardly blame our poor over worked and out-of-date oncologist for feeling intimidated and overwhelmed. The bars around the convention centers are jammed each evening with doctors trying to get rid of the migraine resulting from a full day of information overload.
How long does it take for detailed and usable information to trickle down from clinical research down to the local level? Let us take a couple of examples from our own neck of the woods. Let us look at two popular chemoimmunotherapy combinations that are all the rage these days. FCR (fludarabine, cyclophosphamide and Rituxan) is a combination that has been popularized by the prestigious M. D. Anderson Cancer Center. I looked, and I believe patients were recruited for their Phase-2 clinical trial of this protocol as early as 1999, if not earlier. Except for short and sweet abstracts from presentations made at annual meetings such as the ASH, and glowing press releases to the media, the first professional paper describing the FCR combination in a peer reviewed journal was published in 2005. By that score it wouldbe a good 6 years, and several hundred patient volunteers, before the local oncologist has a chance to read and learn from the work done by expert researchers at our best institutions and get all the facts and not just sound bites.
Another example: Rituxan + HDMP (high dose methyl prednisolone, a glucocorticosteroid drug) that has been talked up in Internet chat rooms and websites. This protocol has yet to be addressed in a single publication in a peer-reviewed journal. An abstract here, a PowerPoint presentation there, a couple of glowing patient testimonials, a few researchers opining that the concept makes sense, this is what goes into defining a new “gold standard” these days. Don’t get me wrong, both of these are examples of impressive and important research and down the road they may even define sturdy therapies that save lives. But to the mind of this layperson reporter, they have not yet proven their point. Treating these protocols as anything other than perhaps promising experimental therapies for which the jury is still out is plain foolish.
When did lower our standards from rigorous multi-center clinical trials with well matched control groups as the definition of “gold standards”, to current practice where sound bytes from early phase studies and uncontrolled phase-2 studies from single institutions have become the definition of “best practices”? In the absence of more clear cut guidance, can we blame over-worked and attention deficit local oncologists for latching on to the latest sound byte from a big name institution? Knowing as we do that the devil is in the details, can we reasonably expect them to know enough of the details to protect us from avoidable risks?
If we were to conduct a poll among ourselves, I am pretty sure we will find dozens of patients who have been treated with fludarabine, the present day “gold standard”. I respectfully suggest there is less to this title than meets the eye. But even if the label is to be taken seriously, there are a lot of niggling but important details that need to go along with the sound bite of fludarabine as the standard of care in CLL, the obvious choice as frontline therapy. For example, how many local guys consider the following details before they hook up their patients to fludarabine infusion needle?
Don’t get me wrong: fludarabine is a very powerful and valuable drug in our fight against CLL, and we are fortunate to have it in our arsenal against the disease. I am lamenting the lack of awareness of the pesky details regarding its use at the local level, details that are all too often lost in our information over-load healthcare system.
Here is a sound bite that you can take to the bank: more CLL patients die of infectious complications than any other cause. No, they do not die of old age or as a result of getting hit by the proverbial truck coming down the turnpike. How many local oncologists are familiar with this sound bite and use it to counsel their patients, as opposed to the “good cancer to have” baloney?
What makes CLL patients so prone to infections?
What are some of the major infections?
Is there anything we can do protect against them?
Funny you should ask. Yes, there are things we can do. There is an absolutely hot off the presses review article that spells out the real “Best Practices” in our understanding of this important issue. I will be reviewing this article in the next few days, be sure to keep an eye peeled for it.
This is what I want you to do, when we publish our review. Read it, make sure you “get it”, spread the word, argue and discuss the validity of the claims with your buddies in the chat rooms. Then don’t hesitate to write to us if you need our help in locating a copy of the original full text article itself, not just our review of it. Print it out, and take it with you to your next appointment with your local guy, make him a present of it. This is “Continuing Medical Education” with a modern twist, a phenomenon peculiar to this Internet era. Expert “Best Practices” that do not get sufficient publicity at the local healthcare level can be given a boost by patient advocacy and patient activism. We can take the extra step, help the process of knowledge trickle down. Our very lives depend on it. Expert credibility, and our grassroots reach, this is a marriage made in heaven.
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