Tag: 2020 Deadline

Does Breast Cancer Owe It to Other Cancers?

A/N This is a potentially offensive post, please follow my train of thought to the end, I am trying NOT to be a jackass, and failing. This is just how I am seeing this issue at the moment. I beg you to change my mind in the comments.

Here is yet another criticism of that 2020 deadline, Can Setting a Deadline Put an End to Breast Cancer?  by Geoffrey Kabat. I’ve already blogged about this issue, when that editorial in “Nature” appeared few months ago.

Honestly, I have a few problems with the 2020 Deadline myself, even more now than when I originally wrote about it. My biggest problem is one of the main issues confronted by these editorials: that discovery cannot be forced; it will not answer to a deadline. I agree with this, and even the idea that setting a goal that has a real chance of NOT being met is a bit risky.

But what irks me is in both of these pieces, there is this suggestion, no, AN EXPECTATION that breast cancer activists, advocates, organizations should focus on other cancer problems, not just breast cancer. These activists/organizations have done such a good job of creating awareness (really?), the energy should be applied to other cancers, so the thinking, I assume, must go.

Is it really the best solution for National Breast Cancer Coalition, or any other organization DEDICATED to breast cancer, to handle other cancer problems? I mean, National BREAST CANCER Coalition, see? BREAST CANCER right there in the name. There probably are already some organizations taking on other cancers in baby steps now; goodness knows the damn ribbons for all other diseases exist (stop reducing diseases to ribbons!), and I suspect these groups have adopted some tactics of breast cancer awareness. If so, let us hope these groups learn from pink marketing’s mistakes before they go too far. The deadline has a focus of ending breast cancer, misguided or not, but that is because the whole point of the organization is…wait for it…BREAST CANCER. That is why it formed. Its objective, according to an old address by its president Frances Visco, is to end breast cancer and cease to exist because it would no longer be needed. Why would anyone think it should do other work—to self-perpetuate?

It’s just that the logic demanding breast cancer organizations (which were formed for WHAT disease, again? yes I’m being sarcastic) work on other cancers is flat out faulty. Go with my flow here for a second. This author points out lung cancer kills more women, and says a breast cancer organization should do something about it. This implies breast cancer is just a women’s problem, breast cancer organizations are just women’s organizations. Well, no, men get it too, and a breast cancer organization is about all breast cancer no matter what the sex of the body it’s in; and the breast cancer organization is not focusing on all health issues suffered by women (because it was formed to focus on what disease again? Say it all together now: BREAST CANCER). Yes the opposite is true; breast cancer can be under the umbrella of women’s health. So when he says “The exclusive focus on breast cancer skews one’s perspective by blotting out other opportunities,” does he really mean we should get rid of some breast cancer organizations, and pay less attention to breast cancer because other diseases kill more women, and are therefore more important? Because that is kind of what it sounds like, and that would be incredibly stupid.

Also, I am a little confused and bewildered at the author’s suggestions that breast cancer organizations work specifically on lung and cervical cancers. According to the information in his editorial, the causes of these two are known and preventions available. The reason the 2020 project is in place is to find the cause(s) and some preventions for breast cancer. That would mean, work on breast cancer is far behind the work on these other two cancers. So, is he suggesting breast cancer organizations work on these projects because, what, it’s easier? And what, just say to future breast cancer patients, sorry you’re SOL, it was easier to sell what we already had or knew, because we did not want to invest in even trying to make a discovery?

Perhaps the bug up everyone’s ass is jealousy because of all the attention breast cancer has amassed over the past few decades. I KNOW lung cancer AND heart disease kills more women. Not this article, but plenty of other articles about heart disease always seem to start off with a sentence about how heart disease kills more women than breast cancer, as if the authors are personally offended that breast cancer gets more attention than their cause (read this fabulous rant by a blogger on Tumblr). I know everyone has their own agenda, their own pet cause because it is something that impacts them, and each individual is entitled to their viewpoint and their cause. But picking on breast cancer is just getting tiresome.

Breast cancer organizations are most likely run/staffed/founded by those with personal knowledge of it, which is why they work on it (duh, it is what they know best), rather than, say, heart disease. I blog about breast cancer because I had it. When I get heart disease, I’ll blog about that too. It is the nature of the beast. Should diseases that kill more people get more attention? Maybe, but how does that make those diseases more important, more devastating, than a rare disease to someone who has had loved ones die from said rare disease? Who the hell goes around saying “my disease is more important than your disease because it kills more people”? Breast cancer patients, imagine saying to your ovarian cancer friends “breast cancer is more important because more women have it?” How much of an asshole would you have to be to say that? But it seems OK to imply these other diseases are more important than breast cancer for the same reason. Breast cancer may be viewed as a big ol’ pink bully in disease world, but it is starting to be the one bullied. Apparently payback is a bitch.

color pink

The blessing and the curse of pink marketing is that it made breast cancer seem like the most important and desirable cause in the world; getting a lot of money and research which resulted in treatments that saved lives, including my own, for which I am grateful. But the fact is, pink dollars didn’t stop breast cancer from happening to women, it didn’t even really slow it down, just stopped some of the dying. But not all of the dying. Breast cancer patients still get mets and die, no matter how much pink marketing pretends this doesn’t happen (remember, cancer patients don’t die, they lose their battle). In short, pink has not been a blinding success. So when advocates for other health causes complain about how much attention breast cancer gets, I suggest taking a long hard look at that, and understand there is a dirty underside to pink that needs exposure. And there are plenty of bloggers exposing it, it wouldn’t be hard to learn the truth.

Back to the question at hand, do breast cancer organizations owe it to other disease problems? I’m certainly not suggesting here that breast cancer groups should just turn up their noses and say “not my problem” about other cancers. There are more breast cancer survivors because incidence has not decreased like the death rate. I may feel a personal obligation to advocating, yelling, on behalf of those causes, but I don’t think an organization devoted to a certain focus should split that focus; that is unfair to the people the organization set out to serve. It is difficult to say which is the more compassionate choice here, if there is one. And yes I do realize that new organizations for unrepresented causes/diseases cannot just be created with the snap of fingers. I don’t have the answer; I’m only asking the question. It will take many minds to come up with the solution.

The 2020 Deadline Debate

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.

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