The responses to my recent post about Breast Cancer Awareness Month were interesting. One commenter suggested that instead of addressing specific issues or charities, it would be better to “focus our energy on political action for good national health insurance“. I’ve seen this argument made before, specifically about breast cancer awareness. While you certainly won’t get any arguments from me against better health insurance (I hate hate hate hate the system in the US and I’m among the privileged who at least has health insurance), I’m not convinced that that’s the only issue at hand when it comes to achieving adequate levels of awareness and preventive care.
First, should we give up on incremental action in other realms until the overall health care system gets figured out? Second, even if we do achieve major gains on that front, will that really take care of all associated concerns? Unlikely. One way to approach this is to see whether people in countries that have good universal health care are all educated about various illnesses and preventive measures. The answer is likely no, which suggests that there is room for awareness campaigns.
Perhaps people are sick of all the pink. To be sure, I get skeptical about some companies’ approaches. But bad marketing on behalf of some doesn’t mean that there aren’t real issues to consider. Nor is it simply a women’s issue as men have partners, mothers, sisters, daughters and friends who’ll be affected. In fact, having watched some of these situations play out, the person fighting cancer is often stronger than those surrounding her so the emotional toll something like this can take on people is significant in and of itself.
Of course, it’s not enough to know that you should be getting a mammogram if you simply can’t afford it or if it’s too complicated to figure out where/how to get one. But there are charities that address those particular disparities as well. Should we ignore those efforts as we wait for universal health care to kick in? (And again, any guarantees that will address the necessary awareness associated with early detection?)
I was going to propose a trade. You donate some money or effort to the cause and I give you something in return. I started thinking about it too late though so I’ll table that for another time. Nonetheless, here are some pointers to charities that work to prevent and cure breast cancer. Alternatively, if you have no money to give or you don’t believe that’s a good use of resources, take some relevant action. Ask a loved one if she’s gotten a mammogram recently, read up on issues, encourage others to do so as well (including what it is that people need to look out for in terms of detection). A friend of mine was diagnosed when her partner noticed a change in her breasts so it’s important for men to be aware as well. Even among women who have adequate health insurance and are well aware that they should be getting regular testing, many don’t. Is it so bad to want to do something about that?
{ 20 comments }
Fr. 10.16.08 at 1:00 pm
I do not think anyone in the previous debate would answer “Yes†to your final, rhetorical question – “Is it so bad to want to do something about that?†Simply, the idea was raised that fixing health care goes first in an egalitarian view that defends the elimination of health inequalities amenable to human intervention. I have rephrased the argument in the comment thread for the previous post.
Again, this argument can be written in analogy to Internet coverage – if you tell people to go and check on the Internet what kind of water is safe to drink, you make a few Internet users better off, not the African populations with no Internet coverage and who suffer the most from water-borne infections.
Is it so bad to want to do something about the inverse care law?
sd 10.16.08 at 1:27 pm
Mark Kleinman will rant about this from time to time. He reminds us that health is not the same thing as healthcare is not the same thing as access to healthcare is not the same thing as healthcare finance.
Mark is, as you would expect, an advocate of government provided healthcare/healthcare financing. But he recognizes that this will create some improvements in health, but not get us to full potential.
“Fixing” healthcare finance may well be a worthy goal, but it will only do some of the things necessary to make americans healthier. Indeed, without medical research and better preventative care (which is only barely influenced by who pays for healthcare), the most lefty, Euro-styled healthcare system imaginable will implode under its own weight once the baby boomers start getting old.
Cian 10.16.08 at 2:23 pm
I’m not sure I see the point. I can see the point of raising awareness of heart health, diabetes and conditions that have lifestyle causes/treatments. But there’s not much you can do to avoid breast cancer, and screening the general population seems to have no affect on the death rate for women under the age of 50 (i.e. it doesn’t save lives), but obviously sucks resources from elsewhere in the health system.
I’ve seen it argued that one problem with customer led healthcare systems is that they tend to push resources to perceived problems, rather than areas where intervention can make a real difference. There’s a lot of money spent on screening in the US of doubtful value, or in some cases it may even be harmful.
Aaron Swartz 10.16.08 at 3:01 pm
I’m amazed this conversation has lasted so long without anyone mentioning Barbara Ehrenreich’s award-winning article Welcome to Cancerland.
Eszter Hargittai 10.16.08 at 4:34 pm
Aaron, it hasn’t. First, I referred to other perspectives in both the original post and this one, although granted, I didn’t link to any. That said, the first comment on the original post already linked to this piece.
Cian, I suspect you’re referring to studies that suggest no noticeable difference. This is tricky as studies tend to focus on fairly structured interventions (e.g., formal breast self-exam is shown not to make a difference, but how about partners paying attention vs not? or even self paying attention to changes without necessarily performing a formal BSE?).
lemuel pitkin 10.16.08 at 5:08 pm
Two issues here:
One is whetehr universal health coverage obviates the need for other efforts to improve health outcomes. Ezster is certainly right that the answer is, No. Universal coverage would not, in itself, gurantee that e.g. all parents get their kids vaccinated.
The second question is whether efforts to “raise awareness” of particular diseases do more harm than good. Here the case is much less clear. Seems to me that breast cancer is already over-salient compared with other, equally prevalent, forms of cancer, cancer is over-salient compared with other diseases, and disease is over-salient compared with other health risks. And I’d even argue that health is over-salient compared with other contributions to people’s wellbeing.
lt 10.16.08 at 5:40 pm
While the first post did mention Ehrenreich, the key points of her critique haven’t really been mentioned: namely, that Komen and coroporate fundraising efforts are woefully inefficient and spend tons on marketing nad publicity, that the focus on prevention obscures the fact that mammograms and BSEs are of debatable efficacy, and that all the research money has led to little improvement in treatment, let alone progress towards a cure, and rates continue to rise likely due to environmental factors. At the same time, many pink ribbon campaigns have created an infantilizing culture that normalize breast cancer as an inevitable right of passage and, most noxiously, as an opportunity of spiritual growth.
I don’t know enough to know if she’s right about all of this, but they deserve consideration.
sg 10.16.08 at 5:52 pm
i would think this whole issue flounders at the start, on the “first we should…”. John McCain may not be able to run for president and fix the credit crunch at the same time; but the rest of us can give a toss about 2 things at once.
Eszter Hargittai 10.16.08 at 5:54 pm
lt – I agree, these points do deserve consideration, absolutely! And they’ve been made for a while. Why assume that everyone falls for this and there are only negative aspects to such campaigns? Isn’t that going too far in the other direction? Doesn’t it also infantilize people to think that they can’t see past some of those issues while still taking important preventive measures?
lt 10.16.08 at 6:07 pm
Taking part in preventative mesaures, sure. The question is, if people have limited time and resources, where are they directed? The ubiquity of pink ribbon campaigns make that the likely default. From what I know about it, Breast Cancer Action, for example, is about giving people what they see as better alternatives, rather than just saying, accept the flaws an participate anyways.
And, even though those points have been made for a while, if overall situation hasn’t changed much, that doesn’t seem to be much of an argument why they shouldn’t be considered. So, no, I don’t think the critique infanitilizes people.
virgil xenophon 10.16.08 at 6:27 pm
I’m with Lemuel Pitkin on this one all the way–a perspective unfortunately little voiced
in the main–with the result that we undoubtedly have massive mis-allocation of what are also undoubtedly limited resources–financial, time, and brainpower. Not that there aren’t a lot of very serious healthcare problems to attend to and a that the present system doesn’t need a major overhaul, but some studies have shown that simply having every home in the US checked for dangerous levels of RADON would do more to improve
morbidity and mortality rates (and thus life expectancy) than a great many of the health screening programs that we obsess on.
Suther 10.16.08 at 6:55 pm
“A friend of mine was diagnosed when her partner noticed a change in her breasts so it’s important for men to be aware as well.”
heteronormative comments make me so mad my blood pressure rises, i hyperventilate,etc. I cannot continue to read this thread and you will not get my comment.
Carmelita 10.16.08 at 7:43 pm
“prevention” efforts? you mean early detection efforts, right? cause not too many folks are talking about actual prevention. which efforts would be effective on some % of breast cancer as well as a shitload of other cancers, thus making these efforts very cost effective indeed.
sg 10.16.08 at 7:46 pm
to the best of my understanding the debate about breast cancer screening concerns its cost-effectiveness, not its effectiveness. There is evidence of differences in screening rates in different countries with national healthcare systems, so clearly awareness is important, both amongst doctors and the rest of the population. So it seems to me that raising awareness is an important activity (unless the differences are due to structural factors).
sd is resurrecting a classic healthcare debate zombie with the ageing baby boomers comment, and given we don’t know what causes breast cancer the comments about preventative healthcare don’t really apply.
Bill Gardner 10.16.08 at 8:29 pm
Eszter,
Thanks for continuing this important discussion. Because you cited my comment on your previous post, let me make clear that I am very much in the incremental action game. I am a health services researcher: My lab develops and implements software to help clinicians and patients communicate within and without traditional clinical settings. I also support disease-focused charities: I cited the great work of the CF Foundation in my post, and last year I raised $2500 by doing a triathlon for the Leukemia & Lymphoma Society. In my comment, however, I was responding to a suggestion from a previous commenter that these charities should be helping people with these diseases to pay for their care. I think national health care is the better solution to that specific problem.
Eszter Hargittai 10.16.08 at 10:29 pm
heteronormative comments make me so mad
I don’t know if they are married or not, what am I supposed to say in that situation?
“prevention†efforts? you mean early detection efforts, right?
I mean prevention in the sense of the term that refers to slowing the course of an illness.
v.x., I appreciate that some efforts that could well be very helpful may be completely ignored, and that’s a problem. But again, given the state of affairs, do we sit back and not do anything? Or are there organizations fighting for these other interventions that could use the infusion of funds? While those get worked out, people can still be helped by early detection.
Bill Gardner 10.17.08 at 12:04 pm
One more point about disease-focused charities: Some of them receive large proportions of funding from pharmaceutical or device manufacturers. (Manufacturers also supply much of the revenue of some medical professional organizations.) The manufacturers support “raising awareness” of a disorder because it helps create a market for their treatment. Raising awareness may the right thing to do, regardless of who supports it. But we shouldn’t be naive. Foundations pitch their appeals by pointing to the suffering and heroism of patients, but we need to examine the programs advocated by foundations on their public health merits.
Cian 10.17.08 at 1:52 pm
Eszter,
I’m referring to to studies where half the group were given regular mammograms, and the other half were not screened. From memory there have been three such studies in three countries, and they found there was no difference in the death rate between the two groups. Also a lot of “tumours” that are treated early after being caught by mammograms are benign, so together with the very high false positive rate, there is a lot of unnecessary anxiety and medical interventions caused by widespread screening.
“This is tricky as studies tend to focus on fairly structured interventions (e.g., formal breast self-exam is shown not to make a difference, but how about partners paying attention vs not? or even self paying attention to changes without necessarily performing a formal BSE?).”
Wouldn’t you expect informal awareness/examination to be even less effective? I think encouraging people to pay attention to their bodies, and to get changes checked is probably a good idea. Not sure that needs to be tied to particular syndromes though.
Tracy W 10.17.08 at 4:01 pm
One way to approach this is to see whether people in countries that have good universal health care are all educated about various illnesses and preventive measures.
Are doctors (in any country) all educated about various illnesses and preventive measures? Says she who wound up having an operation due to a misdiagnosis by a doctor for a problem that could have been fixed with a 7-day course of antibiotics.
DX 10.18.08 at 5:29 pm
@15: In my comment, however, I was responding to a suggestion from a previous commenter that these charities should be helping people with these diseases to pay for their care.
Sorry to be so late – but actually, that wasn’t my point. I think these charities should be helping advocate for a better health care system, so we’re more or less in agreement there. My point was that many of these charities, by focusing on awareness and research, construct our understanding of disease in ways that ignore the experience of many, perhaps most, of the people who actually get sick. If nothing else, I have a hard time supporting these organizations because their framing is so different from my experience of disease.
To Eszter, and the broader theme: if support for these organizations means implicit assent to their agenda, then incremental action may well be at cross-purposes to the larger goal of a better health care system. Given my skills and (limited) resources, I honestly think I can do more for the women in my life by devoting my spare energies to that goal (which isn’t to say I will ignore their health or breasts). No, that won’t solve all their problems, but it will address a great big one.
That said, it seems to me that your proposed bargain is more about doing for you than doing for the women around me. I will gladly accept nonetheless, on the condition that whatever you do for me involves acknowledging my experience and understanding of disease, given that what you ask requires the same of me. I don’t want money and I don’t want ribbons: so what have you got instead?
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