It’s really about living and not wanting to die.


That’s the quote that stands out like a beacon in a thought-provoking yet convoluted article in this weekend’s New York Times entitled , “Costly Cancer Drug Offers Hope, but Also a Dilemma.” The article discusses the cancer drug Avastin, it’s high cost, and the fact that it may only extend life for a few months. It points out how researchers can lose focus by concentrating on slowing tumor growth rather than their ultimate goal of prolonging life or providing comfort. But what I think the article truly does is demonstrate just how flawed our health care research and delivery systems in the United States really are. And there’s the rub. When facing a cancer diagnosis, especially one where there are few evidence-based treatment options and the prospect of dying from the disease is high, there doesn’t seem to be time to think about the big problems. As quoted in the article, “It’s really about living and not wanting to die.” It’s about doing what you can do with what you have available. It’s all hands on deck and pull out all the stops. And rightfully so. As it says in our Manifesto, “This is no time to pull punches. You’re in the fight of your life.” We become keenly focused on which treatments will be best, if there are new treatments or clinical trials available, and how the hell are we going to pay for it all.

But while everyone is doing the never-ending work to save lives that are threatened today, who is standing back to ask the big question, “Are we going about this the right way if we really want to save more lives?” Are we studying the right things? Are we spending enough on research? Are we saving lives only to leave people broken and destitute? And is anyone in charge around here? The article succeeds brilliantly at casting all players (survivors, advocates, physicians, researchers, insurers, drug manufacturers, federal agencies) in this drama as isolated participants doing what they need to do just to exist in a system that doesn’t seem meet anyone’s needs.

The real question in this article is not, “Is Avastin too expensive and delivers too little benefit,” but rather, “Where is the leadership to show us a better way to deliver on the promise of cancer research?”


  1. christin says:

    absolutely. I read this article yesterday and agreed with its overall conclusion. My husband isn’t on Avastin, but he did have colon cancer, his recurrence was unique, and he is currently cancer-free yet enduring more chemo post-surgery. We’re facing the choice right now of whether we’re doing more damage continuing or risking more and stopping. We have no idea. And like you said – who exactly is in charge? When all you’re going on is data – and in the few instances (like my husband’s) where is little to NO data – how do you decide? It’s baffling.

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