My Response to the Article

Highlights that I want to point out:

1. Zevalin is no longer being actively promoted and it was only FDA-approved in 2002. That is very discouraging and very telling. It takes so many years to get FDA approval and to know that oncologists are not using them diligently or not informed about them at all is extremely disturbing.

2. I am not the average patient and neither are the three profiled in this article! Most patients with low-grade lymphoma are seniors (although the younger set are being diagnosed more frequently, another post for another day) and they tend to see physicians as true authority figures not to be questioned. Furthermore they are not necessarily Internet-savvy and doing all the research that would fuel questioning of their oncologists.

3. Lastly I want to remind everyone that my own beloved oncologist did not recommend Bexxar for me -- she recommended traditional chemotherapeutic agents (Fludarabine and Cytoxan) for my last relapse. And even I was initally inclined to accept her proposal, so beaten down after 2.5 years of ill health. Luckily, apparently, she didn't bat an eye when I told her I wanted to go to Stanford and get Bexxar. She made it easy on me. But still. You read an article like this, and wonder, even my oncologist, who studied at Stanford and knows all about radioimmunotherapy and has one amazing success case in one patient (over 7 years post-Bexxar remission) -- even she did not reach for Bexxar for a patient with refractory low-grade lymphoma.

Now what are we going to do, what can we do to influence the system? How can we get Biogen Idec to stand behind Zevalin when doctors are hesitant to refer patients? Hello, there needs to be a better balance between the bottom line and the overall goal of patient survival. Honestly. I get so fired up about this and yet I feel so helpless. All I can do right now is post to my little corner of the web.

Actually I have one meager idea for now, on my insomniac brain and no coffee. Let's at least write the NYT and thank them for the article. It is really still a shock for me to see mainstream media coverage of my exact personal cause...not Hodgkins disease but actual low-grade non-Hodgkins lymphoma. To have radioiummunotherapy in particular addressed in that publication is a huge accomplishment.