I finally read the editorial in Nature magazine called Misguided Cancer Goal, and listened to the audio of Fran Visco’s rebuttal.
I admit I understand the writer’s general point that the public trust must not be risked, and I especially understand his comment about discovery not heeding deadlines. I think that latter point I understood anyway, and in some ways I do not expect complete eradication of breast cancer even within my lifetime. So while I agree that scientific discoveries cannot be forced, it is the small details of this editorial, and some of the comments, that raised my ire.
The first thing that bugs me is the challenge that NBCC’s blueprint does not have scientific information, and the explanation of how and why cancer is complex that follows a few sentences later. There are a lot of condescending “quote marks” (note so self, stop using them so I don’t look like this editorial’s author) criticizing the blueprint for lack of scientific information, as if it were written by children. Look, those of us with cancer have a better understanding than most that this disease is too complex for the one simple cure ignorantly demanded in slogans. Even if the actual complexities are too difficult for the non-scientist to comprehend, please respect cancer patients enough to know that we do grasp the difficulties, but we are the ones facing death, that might be why we come off as demanding or impatient and wanting a deadline. According to Fran Visco’s rebuttal, it does not sound like the deadline document was written by scientists, but by those impacted by cancer, so the point of view is creating an overall plan to get scientists to do the work. Is not the deadline asking for the scientific work, not presenting it?
About the seventh paragraph in, the writer discusses National Breast Cancer Coalition’s argument that research is not motivated by sufficient urgency, and the writer argues that researchers indeed all feel the urgency, but only for goals possible of being reached. This disturbs me quite a bit, because I do agree with NBCC, I think research is motivated more by money than urgency, as in pharmaceuticals that can treat—for a prolonged period of time, and for a price—rather than prevent. Fran Visco mentions that when the goal was being created some scientists seem to think that cancer patients were ungrateful for what has already been done. The way she says this implies that the attitude is similar to some of the general public’s weariness of pink ribbon culture, in which it has been whispered that enough has been done for breast cancer already, and those of us complaining should just back off. I hesitate to get into that right now, but I will say this: breast cancer still kills many, and makes many more very ill and impacts lives in a big way. When you are the one being impacted, yeah, you’re going to demand more and it is hurtful to be told that enough has been done for you already. Couple this with a pink ribbon awareness campaign that has gone on for quite a while, I think it is excusable for the average breast cancer patient to demand better results. Silly ol’ me.
The writer goes on to suggest a few supposedly reasonable goals. I hate to do this, but I object to the suggestion of investing in a plan to encourage human papillomavirus vaccinations as something that NBCC shout carry out. While I believe research and efforts are needed to eradicate ALL cancer, I’m annoyed the writer cannot to stick to the point. What part of National BREAST CANCER Coalition and The BREAST CANCER Deadline is not clear? All cancers, not even just the ones that only affect women, deserve attention and a fight. I just think if one wishes to argue with a group about their goal, then stick to said goal, don’t suggest a new one that has nothing to do with that for which the group was developed! Sounds like the writer agrees with the general discontent that enough has been done for breast cancer, and breast cancer patients and researchers somehow owe attention to other diseases. As a breast cancer patient who has benefited from all the attention, I see the point. But that is for me, a breast cancer patient, to decide, not for one who has not had it. That may seem harsh, but I am too impatient with researchers right now to care about that.
Finally, my last gripe has little to do with the editorial’s author, just with the overall perception of breast cancer. The very first comment brings up Komen and pinkwashing, (with which NBCC has nothing to do), and the usual criticism of breast cancer donating being a “feel-good” activity. It is so hard to remember all the good that Komen and the pink crap achieved in light of the current annoyances they inflict on the breast cancer world. Say “breast cancer” and automatically people think Komen, pink, and good will. The person commenting might understand that NBCC are separate and do not deal in “hope” without a plan of attack, but probably not (small kudos to the editorial’s author for acknowledging in the first paragraph that hope is not a good strategy for preventing/treating disease). The curse of breast cancer and the awareness campaign is that the slogans muddled the real story, so battling it now is like a brand new fight, one far from over.
Yes I am uncomfortable with some of the aspects of the deadline. For example, NBCC’s emphasis on a vaccine, that seems a little too lucrative/attractive for Big Pharma. Personally, I’d like more attention paid to crap in everyday products that cause cancer, and I’d like the removal of said crap. Toxic product removal would not take a long clinical trial as would a new drug, which was another point of contention for the writer (the length of a clinical trial apparently makes the 2020 deadline out of reach). Again, I do not expect complete eradication of breast cancer even within my lifetime. What I do expect, and believe National Breast Cancer Coalition delivers, is a change in the direction of research and how cancer is currently being tackled. I believe NBCC has already changed the direction and the conversation surrounding breast cancer, and thus have a better shot of making some kind of progress against breast cancer than anyone else. The editorial’s author and scientists who seem to have already thrown in the towel cannot say the same.
2 thoughts on “The 2020 Deadline Debate”
Thanks so much for sharing this! I think every time we turn this over we see something new.
I have to admit, I’m on the fence with those one. In theory I do believe that setting a deadline CAN light a fire. The Space Race, as NBCC often points out, is a perfect example. However, I don’t know what is supposed to happen on Jan 1, 2020. Are we eradicating cancer by then? Will we have a vaccine? Will we have stopped it’s spread? And, a question I can’t seem to get the answer to: what about those of us already living with mets. I don’t see us anywhere on the Deadline 2020 agenda.
All that said, I do not think the Nature article helps move us in the right direction either! The urgency matters. It matters in making progress and it matters to the countless women (and men) whose lives hang in the balance.
Then again, with 2 years of Stage IV already past, statistics would suggest my personal deadline expires well before 2020.
I’ll have to take another look at the deadline wording, but I think it may talk about taking action for mets. It is an overwhelming document for my foggy mind. Nonetheless, I want some kind of prevention for the upcoming generations. The deadline cannot rewind time and make it like cancer never happened for me–my feeling is: it shouldn’t have happened to me, but it did, so I will do what I can to make sure it doesn’t happen to others. Even if bitching and complaining about the issue to light the proverbial fire under researcher’s butts is all I can do 😉