New York City politics and unproven cancer screening funding

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The New York Times reports:

“Every year, the Brain Tumor Foundation bombards the City Council with stories of loved ones lost, frightening statistics about the prevalence of cancer and pledges to “literally save the lives of your constituents.”

And each year, the Council responds, turning down food banks, after-school programs and arts groups in favor of the foundation, which provides free brain scans. The group has received nearly $2 million since 2005, making it one of the top recipients of discretionary funds, known as earmarks.

But in doing so, the Council has given the city’s imprimatur to a use of a medical tool that the National Institutes of Health has said “may not be ethical” and whose usefulness in fighting cancer scientists have passionately debated.

“This kind of public health effort gets so far ahead of the data and presumes that all you can do is help people when the reality is you can hurt them as well,” said Dr. H. Gilbert Welch, a Dartmouth professor who has written frequently about the risks of cancer screenings.

In New York, council members said they were moved by the foundation’s sobering testimonials and grim numbers. Some also seemed acutely aware of the political benefits.

“You should print this: Councilman is saving people from cancer,” said Domenic M. Recchia Jr., the Council’s finance chairman. “End of story.” “

Bobby Murcer mobile MRI unit.jpgThe Cancer Letter once reported on this mobile MRI (picture at left appears on The Brain Tumor Foundation website) and wrote: “Skeptics say these folks should have their heads examined. Screening experts … say there’s no evidence to support brain scans for asymptomatic people.”

For some past examples of politics colliding with evidence – and evidence losing – just on screening issues, look at what turned up just in a brief search on this blog.

Addendum on March 4:
Dr. Len Lichtenfeld of the American Cancer Society blogged about the issue today. Excerpts:

“Sometimes you see a story that is just too important to pass up–even if the comments I make here are going to get some New York politicians upset with me and possibly with the American Cancer Society.

But when you see something that defies logic and evidence, and involves millions of dollars that could be put to much better and more effective use, then I believe we have the responsibility to say something, even if it is at our peril.

I plea with New York to spend the money where it is needed for things that work, whether it is food, shelter, parks or proven cancer screening. Just don’t waste money on something that doesn’t stand a reasonable test of medical effectiveness. It simply doesn’t make you look good–or responsible as stewards of the public purse or the public’s safety. And if someone is injured as a result of this unproven screening, it could prove very costly as well.”

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Patrick J Kelly MD FACS

March 9, 2011 at 4:28 am

Here are my comments to Dr Len and to you:
I read with interest your recent blog regarding the use of Brain MRI in the early detection of brain tumors which is based on a recent article in the New York Times. Like many articles in the press, some of the information is true but incomplete.
Please read a recently published peer-reviewed editorial that contains my own experience and follow-up data on gliomas. It explains the entire concept and the logic of brain tumor early detection and what we are doing with the Brain Tumor Foundation:
I hope that you have time to read it. That paper has been out for over two months. Because this journal is open access, anyone – anywhere in the world is able to comment. Over 1100 neurosurgeons and neurologists have accessed that paper. There has not been a single negative comment! If all the experts really believed that the early detection concept for brain tumor was wrong and “unethical” where are they? I would love to debate them.
I also presented this material and described the Brain Tumor Foundation’s early detection program at the May 2010 meeting of the American Association of Neurological Surgeons in Philadelphia. More than 2000 colleagues heard that presentation. There was not a single dissenting comment! In fact I had many colleagues come up to me afterwards to congratulate me.
As you will see in the Surgical Neurology International article, I have spent a career trying to cure primary brain tumors with the most advanced surgical methods available as well as state-of-the-art adjuvant therapy. The overwhelmingly common outcome is that the patient almost always dies of his or her disease – perhaps a little latter in the course than would be expected from the natural history without treatment, it’s true, but still dead nevertheless.
How quickly these tumors kill patients is a function of the malignancy of the tumor when first diagnosed. Malignant tumors kill patients faster than less malignant tumors. However, in my experience most symptomatic low grade (“benign”) gliomas almost always become the malignant glioma that kills the patient – in spite of whatever therapy they receive.
We are making the diagnosis of brain glioma far too late for any therapy to be curative. By the time the patient presents with his or her first symptom, the vast majority of these tumors have isolated tumor cells far a-field of the primary tumor mass. Treatment then is palliative, gives the patient a few months or years of survival before the patient usually dies of the disease. It is like making the diagnosis of breast cancer after the tumor has spread to regional nodes the lung, liver and beyond, a colon cancer to liver, lung or brain or diagnosing prostate cancer after it has spread to the pelvis and skeletal system.
That’s why we have early detection programs for breast, colon and prostate cancer. What’s wrong with an early detection program for brain tumors? Find them early when they are small and easier and safer to treat. Find and treat them before they turn into the malignant tumors that will eventually kill the patient. And unlike breast, prostate or lung cancers that metastasize to other organ systems, brain tumors very rarely metastasize outside of the central nervous system. Theoretically if there is any cancer that is potentially curable, it’s a brain tumor! These usually don’t metastasize outside of the central nervous system! Why is this concept so difficult for some to understand?
Because it has not been shown??? How will we ever know if the concept of early detection is valid for brain tumors if we don’t try it?
As an academic neurosurgeon who has operated on about 7300 brain tumors over a 35-year career, I can tell you that it is much easier and safer to operate on a small brain tumor than a big one. In addition, surgery to remove a small early tumor can be far less invasive than surgery for a large and biologically advanced tumor. In fact, there are non-invasive methods such as stereotactic radiosurgery that can be used to effectively treat small early tumors.
However, in my experience once brain gliomas start producing symptoms, they are almost always incurable (with a few rate but notable exceptions – pilocytic astrocytoma, for example). I believe that we may have a better chance at curing them if we were to find them before they become symptomatic.
I am aware that many groups are working on “genetic testing” as a possible way to detect early brain tumors (among other cancers). Nonetheless, we don’t have these methods available now.
But we do have MRI. An MRI can find very small tumors as well as other conditions that might be good for a person to know about – like aneurysms, various types of malformations and degenerative diseases that have not yet become symptomatic. But we’re talking about brain tumors here. What’s wrong with using MRI for early detection of brain tumors?
There are a number of details regarding selection and follow-up that may be too complicated to discuss here. However, if there are any readers, NIH employees or spokespeople from any other “Foundation” interested in brain tumors, who would like to discuss the merits and logic of early detection with me in an open forum, I would be happy to do so.
The key question is: should City money have been used to fund such a public health project? Your readers should be aware that an NIH study that detailed the findings1000 MRI brain scans in normal volunteers was published in the July 1999 issue of the Journal of the American Medical Association. Among 165 abnormalities found in these “normal” volunteers were 3 early gliomas. Well, 3 gliomas in 1000 individuals in a general healthy population may not seem like very many. But let’s multiply that number (3 in 1000) by the population of New York’ s five boroughs as per the 2009 census data. These would indicate that there are 7700 undiagnosed brain tumors in Brooklyn, 6920 in Queens, 4191 in the Bronx, 1475 in Staten Island and 4887 in Manhattan. All together, 58,624 citizens theoretically harbor undiagnosed and potentially lethal gliomas in the city of New York! We know how many will become symptomatic in a single year (about 1500 in New York City’s greater metropolitan area). We do not know how many will become symptomatic in a lifetime.
How many of these supposed 58,624 New Yorkers will show growth and need treatment? Probably only a small percentage. The rest will require follow-up studies. We are not proposing to treat every abnormality we find – that would be like doing a coronary by-pass operation on everyone with high cholesterol and hypertension! Only persons having a glioma that meets certain criteria would be offered treatment. The rest would be followed with repeat MRI’s. If any of these show growth of the lesion, treatment would be advised.
In addition, it may be far less expensive to treat small low-grade gliomas by non-invasive radiosurgery or minimally-invasive image guided surgery than it would be to treat malignant, lethal tumors that require one or more extensive surgeries, radiation therapy and various types of chemotherapy for a total overall cost of between $450,000 – $1,000,000. The benefit of all this expense at present is to provide that patient with another 12 months or so of sometimes poor quality survival. Finding tumors earlier, when they will require less expensive treatment may ultimately be less costly for the city and society in general and may save lives.
If we can’t use early detection until it’s “proven”, how are we ever going to prove its efficacy?
Patrick J Kelly, MD FACS
Joseph P Ransohoff Professor and Chairman (Retired)
NYU School of Medicine
President and Founder
Brain Tumor Foundation
New York, NY