Jul 23 2007

Lymphoma Patients’ “Secret” Option

Before you read this blog post, I’ll beg you to be patient with me. Having been diagnosed with lymphoma myself, and reading the article I’m about to cite, my disgust and anger can’t be bridled…

If you have been diagnosed with non-Hodgkin’s lymphoma, there may be a cure for you that your oncologist hasn’t even mentioned to you. Yes, I said a CURE. Not just a treatment. A cure.And the reason you don’t know about it is because your oncologist won’t make any money from it. Since he can’t profit, you won’t be cured. Seriously.

Here’s the article I’m referring to, and when you read it, you’ll see why it angers me so. It’s from the New York Times.

It regards numerous patients, all late-stage non-Hodgkin’s lymphoma patients, all of whom had already suffered through chemo, and were then given a shot of either Bexxar or Zevalin, and never needed treatment again.

Both drugs are FDA approved. Both are readily available. So why don’t oncologists give them to their patients? Because they don’t get paid to do so. The only place a patient can get a shot of either drug is through an academic medical center, and not at a private oncology practice.

I’ve blogged previously about oncologists and profits from their drugs. To remind you, oncology is the only specialty I know of that directly profits from the sale of drugs.

Ding! Ding! Ding!! Can you spell c-o-n-f-l-i-c-t-o-f-i-n-t-e-r-e-s-t?

My jaws are clenched because…. My own misdiagnosis revealed the truth. At the end of my debacle, I accused my oncologist of insisting I begin chemo (for a cancer I didn’t really have) because it was the only way he could profit from me. He never even responded.

And from the article, I quote:

“One reason is that cancer doctors, or oncologists, have financial incentives to use drugs other than Bexxar and Zevalin, which they are not paid to administer. In addition, using either drug usually requires oncologists to coordinate treatment with academic hospitals, whom the doctors may view as competitors.”

Then, quoting Dr. Oliver W. Press, a professor at the University of Washington and chairman of the scientific advisory board of the Lymphoma Research Foundation, “Oncologists use everything in their cupboard before they refer,” Dr. Press said. “At least half the patients who get referred to me have had at least 10 courses of treatment.”

So let me review to this to be clear:

If you are a non-Hodgkins lymphoma patient (or a caregiver or advocate for one) then get in touch with the oncology department of your closest academic medical center. That will be a university or medical center or hospital that is aligned with a medical university. Here is a list. Request to be seen by an oncologist on its staff, and take copies of all records regarding your diagnosis and treatment. As you discuss options they can provide to you, ask them specifically about Bexxar and Zevalin and whether or not either drug can help you.

Then let me know if you make progress, please!! I’d love nothing more than to know this blog helped you…. because even though my diagnosis of non-Hodgkin’s lymphoma turned out to be wrong, I still feel such a comraderie with other lymphoma patients…. and while news like this angers me, it also provides me with hope that YOU will find relief.

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