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A Painful Story

Paul LevyThis is a painful story to write.

A close friend of mine, in his 40’s, had a persistent light cough for many months. Finally, when he had an X-ray taken, it showed a large tumor on his lungs. He was diagnosed with stage 4 lung cancer. As a non-smoker and strapping, physically fit man, he was shocked, as you can imagine.

He went to his non-Boston-based medical practice, and he was told the prognosis was 12 to 18 months before he would die. They offered him, though, the chance to enroll in a clinical trial, based on a cocktail of chemotherapy agents.

Meanwhile, he wrote to me and another hospital-based friend in Boston, and our cancer experts in both places pointed out that there is a particular genotype of tumor that is susceptible to an oral chemotherapy drug. This type of tumor is present, in the case of non-smokers, about 17% of the time. Folks here recommended that he have a biopsy to see if he was “lucky.”

When he went back to his local medical practice and relayed this information from two of the world’s greatest oncologists, the local doctor discouraged him from getting the biopsy. He said that recovery from the biopsy operation would delay the start of the clinical trial by a month. The doctor intimated that there were very few slots left in the trial and that my friend might be excluded if he waited.

My friend chose to ignore the local doctor’s recommendation, relying on the advice of the Boston doctors. He came here and had the biopsy. It was a match. He started the chemotherapy regime, and it shrunk the tumor by 90%. This enabled it to be surgically removed, with good pathology results in the surrounding tissues. After surgery, he returned home in good shape and has started a maintenance chemotherapy program.

Upon returning home, too, he discovered that the local clinical trial actually was not at all fully subscribed, that they have been having trouble getting enough subjects.

The conclusions I draw from this are very distasteful. Perhaps I am too close to this because it involved a friend, and perhaps others of you see this differently; but I see a medical practice that intentionally put one its patients at risk to support the professional advancement of one of its doctors, and perhaps the financial advancement of that person or the practice, too.

Am I being unfair in my characterization?

Paul Levy is the President and CEO of Beth Israel Deconess Medical Center in Boston. Paul recently became the focus of much media attention when he decided to publish infection rates at his hospital, despite the fact that under Massachusetts law he is not yet required to do so. For the past three years he has blogged about his experiences in an online journal, Running a Hospital, one of the few blogs we know of maintained by a senior hospital executive.

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Lung Cancer StoriesAnnieRobertsGreg PawelskiJohn IrvineHand Gel G Recent comment authors
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Lung Cancer Stories
Guest

We make sure to provide you the best options for how to survive lung cancer. If you or someone close to you has been diagnosed with lung cancer, then this would be the right place for treatment of lung cancer.

AnnieRoberts
Guest

The fact is that when it comes to terminal cancer, there are some choices to be made and i am glad to hear that your friend ended up making the right one. This was a very inspirational story, since this subject is close to my heart as well..

Paul Levy
Guest

rbar,
Thanks for the clarification about “vague conflict of interest.” If you read my blog regularly, you will see many stories about where our hospital fails to do things right, too. BTW, in this case, the patient actually did not go to our hospital, but to one of our neighbors and competitors in Boston.
On the broader questions of disclosure, I don’t know the right answer. As I mentioned, it is a subject often debated within all academic medical centers, and there are a variety of approaches adopted.

Greg Pawelski
Guest
Greg Pawelski

Jeff B
I agree about the FDA approved indication as not being the gospel for a drug. I know very well the efficacy of Taxol was dismal to say the least, and it still was used to treat ovarian cancer, to the detriment of many patients.
Despite the fact that when clinically relevant and accepted drugs have the same efficacy, and a tumor is resistant to one of them, it is within the standard of care to give the drug with the least resistance and/or the drug with the most sensitivity.

Jeff B
Guest
Jeff B

Greg, Please don’t mistake the “FDA approved indication” as the gospel for a drug. The fact that the trials were not targeted against EGFR mutations, at best, represents a lack of a complete understanding at the time of trial design (many years ago). At worst, it is the manifestation of another conflict of interest. After all, the drug may be more profitable for the manufacturer if it is used on more patients (even those for whom it will provide no benefit). If either of these companies wanted to have an EGFR mutation specific indication approved, they would have to start… Read more »

Greg Pawelski
Guest
Greg Pawelski

Large academic cancer institutions that are soulfully involved in clinical trials feel a subtle pull towards getting patients involved in those trials. It is the mindset of rewarding academic achievement and publication over all else. The present system exists to serve academic achievement and publication, but not to serve the best interests of patient. If the drug was a tyrosine kinase inhibitor like Tarceva, the FDA approved indication for Tarceva did not limit prescribing specifically to EGFR positive patients. In the registration trial, only one third of the patients were tested for EGFR and determing response based on EGFR was… Read more »

John Irvine
Guest

To back Paul on the “vague conflict of interest” comment. Conflict of interest is endemic in this industry — almost everyone stands to benefit in some way, shape or form when an issue is being discussed. We need to apply a reasonable standard both here and in general. Ask yourself this question: Has the person doing the talking established their credibility? I think Paul has. He’s been talking about these issues publicly for years. Both when they help his institution and when the hurt it – which is important. Call me a fascist, but I actually don’t think there is… Read more »

rbar
Guest
rbar

Mr. Levy, Let me preface this by saying that I am sorry about what happened to your friend, and also about the conslusions one might draw from that episode. However, you are a high level administrator and you are commenting about care in your very own backyard. It makes your institution look good and an unnamed doc very, very bad. That’s what I meant with “vague conflict of interest”. But I believe my previous post made it obvious that I in fact believe that these and similar stories do happen. But I also believe that the problem is pervasive in… Read more »

Hand Gel G
Guest

Hi Paul
You asked, ‘Am I being unfair in my characterization?’
No, sadly, I don’t think you are.

InfoMarkI
Guest
InfoMarkI

In most non healthcare professions such efforts to deceive “clients” for the gain of the vendor professional could be the basis for criminal action. It is an interesting issue that in this medical instance it is even appropriate to question the ethics.

Paul Levy
Guest

Dear rbar, I don’t think the issue is whether a doctor is salaried or not. (Indeed, in this case, I have good reason to believe the doctor was salaried.) I published this story because it is a compelling story and telling it might cause people (patients and doctors) to raise questions that they might not otherwise raise. The Harvard system (which includes BIDMC, the Partners hospitals, and others) has conflict-of-interest policies and disclosure rules. There is often a debate as to whether they are too strict or not strict enough. I think that debate is more or less typical of… Read more »

Jeff B
Guest
Jeff B

A lung cancer biopsy is no small matter, I do understand why the clinician was hesitant to perform this for a less than 1 in 5 chance that the mutation would be found. Life is like poker in that sometimes a fool wins a hand he should have folded and a tight player gets handed a bad beat. We can’t retrospectively analyze this decision based solely on the outcome. I’ll go out on a limb here and guess that this oral chemotherapy drug is a tyrosine kinase inhibitor that only works when a specific EGFR mutation is present. Most probably,… Read more »

Nancy
Guest
Nancy

Paul, in my opinion your characterization of the medical care your friend received in the non-Boston-based practice is accurate. I worked for a short time in an academic-based medical practice in which patients, who had a partial response to an antidepressant, were offered the chance to participate in clinical trials. The problem was that other standard treatment options, such as psychotherapy, were not offered to patients prior to clinical trial recruitment. The doctor-trainees and their supervisors had dual roles as clinician-researchers, and they had much to gain from recruiting their patients for clinical trials. This arrangement set the stage for… Read more »

rbar
Guest
rbar

Mr. Levy – I would be interested why you relate that story in this blog, and what conclusions you draw from it … you are influential in the health care field (and BTW, one could even raise the issue of a vague conflict of interest). My conclusion from the story is that too many medical decisions in the US are tied to strong financial incentives, and that logically, these incentives have to be be taken away or minimized. My suggestion would be to have salaried doctors, with only small incentives to see more patients than usual, or to do that… Read more »

Vikram C
Guest
Vikram C

Congratulations to your friend. He made right decision. In another article about – ‘gimme my dam data’, Merl B in comments section made a point about second opinion industry.
Having data is very helpful for second opinion industry and then taking ownership and your friend took his own decision.
A question worthwhile asking is how frequently do such things happen? Since this was a question of life and death outcome was very obvious. But at smaller levels, how often do doctors get it right?