The Komen/Planned Parenthood Rumble

I really, really need to take care of laundry and chores today. Jonah's big toe  is sticking out of his sneakers. I need to go to the gym. Ugh. But I just wanted to throw out a couple of links to the Susan B. Komen and Planned Parenthood rumble. It's has eaten up my RSS and twitter feeds for the past couple of days. 

Check out Nicholas Jackson's post for info on why this happened. Jezebel

While my last post was a bit of downer as I told some of the secrets of Internet traffic, I do think that the Internet is an amazing device for organizing and mobilizing people. It was breath-taking to watch the protests against the Komen Foundation mobilize instantly and across the various Internet platforms. 

Top Komen official resigns

85 thoughts on “The Komen/Planned Parenthood Rumble

  1. The best thing I’ve read on this was an analysis of how Komen let this spiral out of control by remaining tight-lipped and hoping it would go away. I don’t know if you can sue marketing managers for malpractice, but I suspect this would make a good test case.

  2. That marketing analysis is interesting. I wasn’t following the controversy yesterday, because I’m not a big Komen fan (vaguely not, with no strong feelings). I am a big planned parenthood supporter, and so my first real summary about the issue did break through PP & other friends who support PP.
    By letting the issue evolve the way they did, they did indeed settle themselves in a middle of a controversy that has no easy way out.

  3. The marketing analysis said:
    “Komen for the Cure, it seems, is no longer a breast cancer charity, but a pro-life breast cancer charity.”
    And just a few weeks ago, they were widely viewed as a pro-choice breast cancer charity. The funding connection between Komen and PP was well-known and has probably lost them untold millions in donations over the years. It will be interesting to see what the net result is of dropping the $700,000 in yearly funding. Between losing some donors and gaining others, there may be no net difference. It would also be interesting to hear what Komen was planning to do with the freed-up funds.
    There’s another take at this at Get Religion:
    http://www.getreligion.org/2012/02/media-discover-planned-parenthood-is-controversial/#comments
    It’s somewhat murky whether PP does significant numbers of mammograms at all. They apparently do a lot of breast exams, but since manual screening (either self-exams or office exams) in are actually associated with greater harm to the typical risk patient because of false alarms, PP may not be bringing much to the table, medically speaking.
    http://en.wikipedia.org/wiki/Breast_cancer_screening
    http://www.washingtonpost.com/national/planned-parenthood-challenged-on-purported-mammogram-claim/2011/03/30/AFjCFO3B_story.html

  4. (shrug)
    If you look up Planned Parenthood and the Komen Foundation on Guidestar.org, they are both extremely wealthy. Really, really well-funded organizations. There are 31 PP chapters with more than $10 million in income. 28 with income between $5 m and $10 m. (etc.) A half-million or so isn’t a big deal, in comparison to both organizations’ income.
    Planned Parenthood seems to be playing this up to raise more funds.

  5. Planned Parenthood may be a “well-funded organization,” but we know where the money goes: to underserved populations who need reproductive health care. I ought to know; I was a married woman who got birth control and a gynecological exam from Planned Parenthood when I had almost no money.
    Where does the Komen Foundation’s money go, now that they’re withholding $750K of it from PP? To produce more pink crap to sell? To pay the salaries of these incompetent marketing executives?

  6. PP is also providing reproductive health care to millions of women. When you’re doing that, $750K is necessary. I wonder how much money Karen Handel makes.

  7. I would say PP is “pro-life.” They saved my life last year. Without them, I would literally be dead. Of course, maybe I’m biased, but I prefer to be alive, and am rather grateful that PP was there to save it. If you dislike PP and want to defund it, then I ask you to look me in the eye and tell me my life matters less to you than some hypothetical embryos.
    I had a real medical emergency, but they also save women’s lives in a more mundane way through all sorts of cancer screening treatment, STD treatment, prenatal care, and even general medical treatment. I have a friend who worked there, and she knew of women who got treatment for pneumonia and even TB at PP, since they’re the only place where poor, uninsured women can routinely get a timely appointment.
    I would guess PP saves more lives than all ‘pro-life’ organizations put together. If you want to be MORE pro-life, then I suggest putting one’s actions where one’s rhetoric is and step up and provide free health care to un and under-insured women.

  8. This is really growing to be an unfortunate public relations issue for Susan Komen Race for a Cure, watching it evolve. The issue for SK is that are a apolitical marketing charity, one that a business can safely stash its logo on without threats that their customers will be upset. The pink ribbon is supposed to make people feel vaguely good.
    Amy suggested that Komen support of PP made them controversial in some communities. But this move to “sever relationships with PP” shouldn’t remove that controversy, since Komen’s reason is “investigation by local authorities.” What if the investigations stopped? would they fund PP again? If Komen were ready to take a stand against PP, they could have done so, and potentially, gained the benefits and costs of being a “pro-life” (or anti-choice) organization. Komen chose a stealth plan instead, and are reaping the costs (but will they get benefits?).
    Komen has good charitable ratings at Charity Navigator, 80% of their revenues go to program, they are transparent, a well run charity. As of today, they have a 1.2/5 reviewer rating and 200 reviews posted since this morning). And, I don’t expect the anti-abortion people to be coming out in support, since Komen hasn’t actually taken a stand against Planned Parenthood (but used a technical excuse to withdraw support).

  9. And, the controversy broke just in time to give”Pink Ribbons, Inc.”, an anti-Komen documentary that lambasts the incorporation of the pink ribbon.
    http://www.nfb.ca/film/pink_ribbons_inc_clip
    “Pink Ribbons, Inc. is a feature documentary that shows how the devastating reality of breast cancer, which marketing experts have labeled a “dream cause,” has been hijacked by a shiny, pink story of success.”

  10. I have felt for a long time that all of that money going to breast cancer “awareness” is wasted. I mean, is anybody not aware of breast cancer? Does seeing a pink ribbon on eggs make anyone better off?
    I already contribute to Planned Parenthood, and intentionally do not contribute to Komen. So, as much as I’d like to say, “I’m going to stop giving to Komen!” — which I would have, it doesn’t effect me at all.
    I just hope this has the effect of directing more money to improving women’s health, and less money to “awareness” of women’s health.

  11. BI,
    Aren’t you going rather far afield from the question of whether PP is cost-effective at cancer screening? Komen is a breast cancer charity. The question is whether PP is a good place for Komen to spend their money.
    PP does 170,000 clinical breast exams with the money they get. Rather obviously, they are not doing actual mammograms at $4 a pop, but just the usual perfunctory grope. If they were doing real mammograms, let’s give them the contract for Medicare, because that’s freaking amazing that they can get their costs so low. (Here’s a cite for the breast exam number funded by Komen via PP.)
    http://abcnews.go.com/blogs/politics/2012/02/senators-urge-komen-foundation-to-reverse-troubling-planned-parenthood-funding-cut/
    Unfortunately, those exams are (at least for the average woman) ineffective:
    “Breast examination (either clinical breast exams (CBE) by a health care provider or by self exams) were once widely recommended. They however are not supported by evidence and may, like mammography and other screening methods that produce false positive results, contribute to harm. The use of screening in women without symptoms and at low risk is thus controversial.[5]
    A 2003 Cochrane review found screening by breast self-examination or by clinical exam is not associated with death rates among women who report performing breast self-examination and does, like other breast cancer screening methods, increase harms, in terms of increased numbers of benign lesions identified and an increased number of biopsies performed. They conclude “screening by breast self-examination or physical examination cannot be recommended.” [1]”
    http://en.wikipedia.org/wiki/Clinical_breast_examination#Breast_exam
    I see a lot of references on the internet (especially in defenses of PP) to PP sending patients out for mammograms with a referral rather than doing it in-house, so it seems to me that there’s definitely an opportunity for Komen to disintermediate by cutting out the middle man (PP) and just dealing directly with the radiology people. Or maybe PP could buy the appropriate machines and hire the appropriate technicians.

  12. Amy, I don’t think you’re really understanding the PP issue in terms of the reality of how PP interacts with communities. It’s as if people think, Hey, that is a PP in my neighborhood. I bet people only go there if they need an abortion. The fact is, it’s generally a place where women of reproductive age go because they are having sex and they need people to take care of that aspect of their health.
    If Komen stops giving money to PP and decides to “skip the middleman,” the end result isn’t that these women will go get any kind of mammograms at your friendly mammogram-offering place right next door to PP. There probably isn’t one next door to PP. There probably isn’t one anywhere where women in poverty want to go get one.
    What happens is that women have sex, because that’s what women past puberty do. Things happen with their lady parts. They get a UTI or yeast infection, they think they’re pregnant, they want birth control–something like that. Except for condoms, they generally have to have some kind of medical exam before getting help. Then they develop a relationship, and the next time something happens, they’ll go back because it was affordable and easy and pleasant. Maybe the 4th or 5th time they go, someone will notice a lump in their breast and say “Hey, you need to take care of that. Here’s why.”
    So PP serves a very important purpose, and helping them by giving them funding is a good thing, especially if one purports to care about breast cancer detection and women’s health. Just being sure these women are talking to someone who is knowledgeable about women’s health and who can urge them to seek more/better care is a good thing.

  13. I wouldn’t have had a problem with Komen if they took the money away from PP because it wasn’t using the money for breast screening, but for other stuff. It sounds like it was a political decision though.
    Breast cancer awareness is really important. It creates a pressure on congress. It’s because of campaigns like that Komen’s pink ribbon stuff that breast cancer is the best funded form of cancer. I’ve actually been offended by some blogger who have poo-pooed the dangers of breast cancer. Um, breast cancer really does kill people. It’s a horrific way to check out.

  14. I’ve gone off to make my PP donation, which I do whenever these controversies arise. Like Ragtime, I’ve never supported Komen (out of the corporatization concern, rather than politics), but now, I can be counted on to avoid the pink ribbon when I buy something. My old ways would have been to have a vague preference for it, because, as Laura says, I think it’s a good thing to raise awareness of breast cancer. Not so much for the tax dollars for breast cancer research (I have an issue with that, ’cause it can skew research money towards questions we don’t have good ways of answering) but because until fairly recently, the breast and breast cancer were a taboo topic, that women were afraid to notice issues about their breasts.
    My mom used to take the wives of graduate students (yes, it was always the wives) to planned parenthood in the 70’s, when they awkwardly asked her about not wanting to get pregnant while their husbands were still in school. As Wendy says, planned parenthood is often the only medical professional certain women will see. So taking dollars to provide services away from PP takes them away from this women (they don’t get provided in some other way).

  15. I’m noting other people considering what this Komen policy might mean on other issues. Will they withdraw funds from universities that are undergoing investigation? Is there some more specificty to the official position? For example, right now there’s a criminal prosecution at UCLA over the death of a research assistant in a chemistry lab. Is that sufficient grounds to withhold funds from UCLA?
    And, alternatively, if they’ve withdrawn funds from PP because PP provides abortions, does that mean they might next withdraw funds from a university or a lab because the university or lab does stem cell research?

  16. For wendy:
    “My old ways would have been to have a vague preference for it, because, as Laura says, I think it’s a good thing to raise awareness of breast cancer.”
    In this sentence, “it” refers to the pink ribbon :-).

  17. bj, LOL. I really didn’t know the antecedent of the pronoun when I asked that other time. I’ve also been really really tired these past few weeks and my reading comprehension skills are impaired. :)

  18. No, really, I’m trying harder now. But, I can see how often I still make the mistake. I’m also known for continuing conversations that were only happening in my head (because really, if I think really hard, can’t you hear?)

  19. In re investigations, bj, I’m reading elsewhere that of the roughly 2,000 organizations that Komen helps to fund, the recently adopted rule only affects one.

  20. And, alternatively, if they’ve withdrawn funds from PP because PP provides abortions, does that mean they might next withdraw funds from a university or a lab because the university or lab does stem cell research?
    Yes. They are.
    http://www.nydailynews.com/news/mayor-bloomberg-breast-defense-250-000-gift-article-1.1016374
    “The foundation also said it would not fund any cancer research that involved embryonic stem cells.”
    So, essentially, Komen is now simply an extreme pro-life organization, where interest in curing and preventing breast cancer falls to a distant second place.
    In less than 48 hours, my default assumption has moved to thinking anyone displaying the Pink Ribbon on their car is or know a breast cancer survivor, so assuming that the owner probably also doesn’t believe in evolution or global warming either.

  21. “Wow. This is all very bad news for breast cancer.”
    How so? I don’t know if I’ve mentioned this, but my sister was diagnosed with metastatic breast cancer in the fall, and she has been getting excellent treatment and has a very good prognosis. I don’t see that stopping because Komen is an organization that has stopped caring about breast cancer and women’s health and is now more interested in a pro-life agenda. As this process has gone on, we’ve learned about more and more people we know who are breast cancer survivors. I don’t see people suddenly saying “Oh, whatever” now that Komen sucks. A lot of people are hoping a new organization takes more of a central role in breast cancer funding/research. I gave so much money to people who did the Komen walks, but those people aren’t going to walk for Komen and now want another organization to walk/fundraise for.
    Meanwhile, what is happening as well is that people are talking about all the things PP does that do not involve abortion. It wasn’t until my late 30s, post-childbearing, that I started seeing an internist rather than a gyn as my main doctor. Until then, my gyn care was my primary care. The gyn would do my paps and annual exams and keep an eye on a lot of the general stuff. If something else came up, which was rare, then I’d go to someone else, usually an urgent care place. That’s what most people do, and for those in poorer communities, PP ends up being that go-to place for gyn care and thus any sort of general medical care, a kind of gateway.

  22. bj said:
    “Amy, I don’t think you’re really understanding the PP issue in terms of the reality of how PP interacts with communities. It’s as if people think, Hey, that is a PP in my neighborhood. I bet people only go there if they need an abortion. The fact is, it’s generally a place where women of reproductive age go because they are having sex and they need people to take care of that aspect of their health.”
    By that same token, PP is an odd fit for breast cancer work. Women of reproductive age are not the primary risk group for breast cancer, which is why the recommendation for mammograms starts at 50. According the Wikipedia article, it’s even unclear whether the 50s are the right time to start mammograms for average or low-risk women. The biggest payoff for mammograms comes for women in their 60s, by which time quite a few women will be on Medicare.
    So, adding this all up, it doesn’t surprise me that with PP’s vast resources, they didn’t get more funding from Komen originally, even when the two organizations were on really good terms. Despite both being “women’s health care” organizations, their clientele and healthcare missions don’t really overlap that much. PP has 800 plus branch offices–in that context, $700,000 is almost ridiculous.
    Ragtime said:
    “So, essentially, Komen is now simply an extreme pro-life organization, where interest in curing and preventing breast cancer falls to a distant second place.”
    That word “extreme,” I think it does not mean what you think it means.
    How would you distinguish between Komen being a pro-life organization and an “extreme” pro-life organization, or are “pro-life” and “extreme” synonymous in your idiolect?

  23. Here’s some happy news from Wikipedia on embryonic stem cell research:
    “Recently, it was shown that pluripotent stem cells highly similar to embryonic stem cells can be generated by the delivery of three genes (Oct4, Sox2, and Klf4) to differentiated cells.[30] The delivery of these genes “reprograms” differentiated cells into pluripotent stem cells, allowing for the generation of pluripotent stem cells without the embryo. Because ethical concerns regarding embryonic stem cells typically are about their derivation from terminated embryos, it is believed that reprogramming to these “induced pluripotent stem cells” (iPS cells) may be less controversial.”
    http://en.wikipedia.org/wiki/Embryonic_stem_cell_research

  24. How would you distinguish between Komen being a pro-life organization and an “extreme” pro-life organization, or are “pro-life” and “extreme” synonymous in your idiolect?
    For me, “Pro-Life” is when you oppose abortions. These people are, in my view misguided.
    “Extreme Pro-Life” is when you oppose not only “regular” abortions, but also embryonic stem cell research on embryos that would never have been implanted in a woman anyway, and oppose the use of birth control such as IUDs and Plan B. I would probably also put in this category people who don’t believe in abortion exceptions to preserve the health of the pregnant woman. I consider these people morally repugnant.

  25. An extreme pro-life organization makes stupid decisions in order to punish pro-choice organizations. A non-extreme pro-life organization says “we oppose abortion rights, but we’re not out to destroy PP or any pro-choice organization; we just want to persuade people that our perspective is the better way.”
    Btw, it was I who talked about PP above, not bj, and all the talk about mammograms is obfuscating the issue. I don’t particularly have any interest in setting up a radiology center in every PP. What I’m saying is that many people do not do self-exams and that the PP clinic is often the main source of health care. When doing an exam to ensure someone is a good candidate for birth control or to check for any symptoms related to STDs or UTIs, it is a good idea to also do a breast exam. That costs money, and PP is already spending a hell of a lot of money on providing all this reproductive care. The least an organization like Komen could do if it purports to care about BC is to help out funding these exams at a point of contact between medical provider and woman.
    These are low-information patients who probably have no idea what to look for and what constitutes a problem. A contact with a medical provider and a woman – and a breast exam – at regular times can *help*.

  26. “Recently, it was shown that pluripotent stem cells highly similar to embryonic stem cells . . .”
    Citing to a 2007 article entitled “Human stem cells may be produced without embryos ‘within months.’” As with many scientific advancements, they don’t all pan out, or they may take more time than projected, of they may work but be 10 times as expensive . . .
    When scientists can make stem cells without embryos for the same cost, they probably will, unless they are not “highly similar” enough. Until then, they will use embryos unless they are stopped by “Extreme Pro-Lifers” who care more for non-sentient embryos than actual living people.
    Again, if you believe that embryos in a freezer are more important than potentially finding treatments for breast cancer, feel free to make that moral judgment, and I will judge you accordingly. But don’t then go solicit funds as an organization claiming to be seeking a cure for breast cancer.

  27. Meanwhile, it looks like Komen is backtracking as we type. We’ll see if it was fast enough to save them, or if the self-inflicted wound was fatal.

  28. Hey, my sister’s breast cancer wasn’t discovered until she had had about 3-4 months of doctors trying to figure out why her neck hurt, an ER visit after a fall that finally revealed a tumor in said neck, and *then* the mammo that found the 1-inch tumor in her breast. No idea if she did self-exams or when her last mammo was. I asked but she didn’t answer, and I didn’t push for one because she was kind of freaking out understandably.
    For some reason, I find it hilarious that Komen has reversed itself. Yeah, we’ll see if that helps. The pink mask has slipped off to reveal the hideous true face of the organization. But mainly I am pissed off as hell at the constant demonization of Planned Parenthood.

  29. While I think that the protests again the Komen Foundaiton is entirely justifiable, I think you’re all loony if you think won’t have an impact on breast cancer.
    Medical research is highly, highly political. I don’t have the numbers right here, but I remember reading that breast cancer research is the most well funded form of research even though people are far more likely to get other kinds of cancers and diseases. It’s because of the Komen foundation. Think about Parkinson Disease, before Michael J. Fox got it, little money. After Michael J. Fox, lots of money. Celebrities and foundations put pressure on Congress to fund research.
    Hmmm. Maybe this will my next post for the Atlantic.

  30. Great idea Laura. I hope you pitch it now. My guess is that one of your strengths as a blogger is that you’ve learned how to cut and print faster (and you do it [“cut & print”] without confusing antecedents).

  31. Just pitched it.
    Thanks, bj. I think that blogging has taught me how to write very, very fast. I’ve also learned a ton from our conversations over the years.

  32. PS: the Simons Foundation has played a huge role in autism research, too. Simons funds more than just autism research, but especially right before the 2008 market crash, they were having a significant effect on the direction that research programs in autism were going, particularly because their goal was to bring in researchers from outside the autism field to study autism (i.e. take a synapse neuroscience and offer him money to study synapses in an autism-specific way. This has tweaked the direction of the science — towards neurophysiological mechanisms & genetics. One can consider this both good and bad, but it is undoubtedly an effect, and a significant one.
    The Gates foundation has had a significant effect on 3rd world epidemiological research.
    Those are foundations which have the effect on research that “superpacs” might on politics, but Komen started out that way (with a seed from Brinker) and Parkinson’s disease too got fundraising seeds from Michael J. Fox.

  33. It’s a Friday afternoon – a bad time to pitch any idea, but I’ve been digging up numbers just for the hell of it. Some very rough numbers:
    Approximately 12 million people get cancer every year. Breast cancer is definitely one of the big ones. 2.6 million get breast cancer. But other forms of cancer are equally devastating. Prostate cancer affects 2.4 million people annually.
    While nearly the same number of individuals are affected by prostate cancer as breast cancer, breast cancer research has double the funding. In 2008, breast cancer research had $572.6 m in funding, while prostate cancer research had $285.4m of funding.
    This disparity in funding is due in part to work by the Komen foundation. They remind us all the time that women get breast cancer and we put pressure on Congress to fund medical research in this area. They hire lobbyists who talk to individual congress members. They also directly give money to researchers. Let’s not throw the baby out with the bath water. Now, that the Susan B. Komen has reversed their decision, let’s keep wearing the pink ribbons. Their work really does save lives.

  34. I will be back to feeling vaguely good about pink ribbons (since Komen reversed). I have never been a pink ribbon advocate (and I don’t participate in fund raising runs, and wouldn’t even if I could run). But, at least now I won’t have to search for consumer items that don’t have a pink ribbon or refuse to wear pink on breast cancer awareness days.
    I do think this incident has exposed the political ideology of some of those in charge at Komen, but, I also hope that people can still work together on breast cancer even if we disagree with the ideology of some/many of their members, and if they don’t enter the culture war against Planned Parenthood. I don’t demand ideological purity from my organizations. In this case, I can deal with Komen’s opposition to funding embryonic stem cell research, as long as they don’t engage in second degree shunning of others who do embryonic stem cell research (and, deal with an anti-planned parenthood member of their executive team, as long as Komen doesn’t do second degree shunning of PP or other organizations that provide a wide range of services).

  35. I think you’re all loony if you think won’t have an impact on breast cancer. Medical research is highly, highly political. I don’t have the numbers right here, but I remember reading that breast cancer research is the most well funded form of research even though people are far more likely to get other kinds of cancers and diseases.
    I think it will definitely have an impact on breast cancer. I’m getting lost, though, on the assumption that breast cancer should be getting more funding than other diseases that people are more likely to get — and given the existing state of affairs, that we should be actively trying to increase the disproportionate imbalance by wearing pink ribbons.
    More American women die from heart disease every year than from every type of cancer, combined (including breast cancer).
    Today, Friday February 3, is “Wear Red Day” where we are supposed to be raising awareness of heart disease. And yet all anyone (including me) is talking about is breast cancer. If there is a decline in funding for breast cancer, and the money is apportioned according to impact so that more of it goes to research on heart disease — that strikes me as a good thing.

  36. In addition to the fact that Planned Parenthood’s pre-menopausal clientele has a low rate of breast cancer in the first place, the birth control that Planned Parenthood dispenses RAISES the rate of breast cancer in precisely that group of women. http://www.ncbi.nlm.nih.gov/pubmed/17036554
    So it should strike anyone as deeply odd that a breast cancer organization would have ever been giving money to another charity that is:
    1) controversial for performing hundreds of thousands of abortions,
    2) delivers no breast cancer services except for those that are basically worthless (as noted by Amy P above), and even
    3) if anything, is making breast cancer WORSE by giving young women extra hormones that contribute to breast cancer.
    Look, if you love Planned Parenthood, you should be giving them money directly; it’s much more inefficient to funnel your gifts through Komen. But if you care about breast cancer, you should target your giving somewhere other than Planned Parenthood (whether that’s Komen or not, I don’t care), as giving to PP for that cause is highly inefficient at best.

  37. Considering my sister developed breast cancer when she was pre-menopausal, I don’t particularly find JD persuasive. I really would have liked someone to find the cancer, too, before it moved to her cervical spine.
    No one is funneling gifts to PP through Komen. That’s a straw man argument. People who have given to Komen have trusted Komen to distribute its funds for research and education and detection. PP is a location where breast cancer can be detected because it is a point of frequent contact between women and medical professionals.

  38. Susan Komen was 33 when her breast cancer was diagnosed and 36 when she died. When I read about Komen and Brinker in the Wikipedia entry, I felt a kinship with Nancy Brinker as women with sisters, even though I was never placed in that painful situation, even though we couldn’t be more different from each other. I think that feeling of kinship is the reason people buy into the pink ribbon, the idea that we can come together over this common experience (or the potential experience) even if we disagree on other subjects.
    I don’t agree with Komen on a number of issues (including embryonic stem cells and mammography screening), but I do think they’ve played an important role in making people think about breast cancer. And though raising awareness doesn’t save lives by itself, the ripple effects, of scientists who work in the field, screenings, treatment, and just openness can.

  39. Wendy:
    “Komen recommends breast exams and obviously does not think they are worthless:”
    Wouldn’t that be their natural bias, though, to urge “doing something,” even if that something is ineffective, because “doing something” raises awareness. It’s a sort of gynecological security theater.
    My mom got and survived breast cancer in her early 40s, so I have no desire to wait until 50 to start real mammograms. I’ve already done a baseline despite being in my mid-30s. On the other hand, Wikipedia’s list of consequences of mammograms even for women already in their 50s really squicked me out, even though I’m definitely also biased in the direction of “do something” for medicine.
    Here’s the Wikipedia quote on the effects of doing mammograms for 1,000 women in their 50s.
    “If 1,000 women in their 50s are screened every year for ten years, the following outcomes are considered typical in the developed world:[8]
    –One woman’s life will be extended due to earlier detection of breast cancer.
    –2–10 women will be overdiagnosed and needlessly treated for a cancer that would have stopped growing on its own or otherwise caused no harm during the woman’s lifetime.
    –5–15 women will be treated for breast cancer, with the same outcome as if they had been detected after symptoms appeared.
    –250–500 will be incorrectly told they might have breast cancer (false positive).
    –125–250 will undergo breast biopsy.
    “The outcomes are worse for women in their 20s, 30s, and 40s, as they are far less likely to have a life-threatening breast cancer, and more likely to have dense breasts that make interpreting the mammogram more difficult. Among women in their 60s, who have a somewhat higher rate of breast cancer, the proportion of positive outcomes to harms are better:[9]”
    http://en.wikipedia.org/wiki/Breast_cancer_screening
    I found some other interesting stuff in the Wikipedia piece on breast self-examination. That article is very negative on self-exams.
    “In a large clinical trial involving more than 260,000 female Chinese factory workers, half were carefully taught by nurses at their factories to perform monthly breast self-exam, and the other half were not. The women taught self-exam detected more benign (normal or harmless lumps) or early-stage breast disease, but equal numbers of women died from breast cancer in each group.[2]”
    That is so depressing. Of course, I wouldn’t have high expectations for Chinese oncology.
    It sounds like the cutting edge these days is to encourage women to do “breast awareness” rather than systematic self-exams. (Now that I think of it, I don’t believe my very bright, very with-it OB/GYN has ever encouraged me to do self-exams.)
    This was also interesting:
    “Breast self-examinations are based on an incorrect theory of cancer development, which assumes steady growth of the tumor. According to breast cancer specialist Susan Love, “Breast cancer doesn’t work like that…it’s sneaky. You could examine yourself every day and suddenly find a walnut.”[6]”
    That’s depressing, too.
    http://en.wikipedia.org/wiki/Breast_exam

  40. I lost a longer post, so here’s a shorter substitute.
    “Komen recommends breast exams and obviously does not think they are worthless:”
    Wendy,
    Here’s Wikipedia on self-exams and clinical exams:
    “A 2003 Cochrane review found screening by breast self-examination or by clinical exam is not associated with death rates among women who report performing breast self-examination and does, like other breast cancer screening methods, increase harms, in terms of increased numbers of benign lesions identified and an increased number of biopsies performed. They conclude “screening by breast self-examination or physical examination cannot be recommended.” [1]”
    http://en.wikipedia.org/wiki/Breast_cancer_screening
    It’s just so irresistible to want to DO SOMETHING in the face of a killer disease, but sometimes we just have to muster the strength to do nothing (but while keeping an eye out for any sudden or unusual changes).
    The same Komen page also recommends to get a mammogram every year for average-risk women, starting at 40, which is wrong, wrong, wrong, so I suspect that Komen’s bias is in favor of over-testing, even if on average that turns out to be harmful to women. I was looking at the Wikipedia stuff on the consequences of over-testing, and it’s pretty gruesome. Here are some numbers from that same page I quoted above for what happens when 1,000 women in their 50s get mammograms (and 50 is a pretty reasonable time to start):
    “If 1,000 women in their 50s are screened every year for ten years, the following outcomes are considered typical in the developed world:[8]
    –One woman’s life will be extended due to earlier detection of breast cancer.
    –2–10 women will be overdiagnosed and needlessly treated for a cancer that would have stopped growing on its own or otherwise caused no harm during the woman’s lifetime.
    –5–15 women will be treated for breast cancer, with the same outcome as if they had been detected after symptoms appeared.
    –250–500 will be incorrectly told they might have breast cancer (false positive).
    –125–250 will undergo breast biopsy.
    “The outcomes are worse for women in their 20s, 30s, and 40s, as they are far less likely to have a life-threatening breast cancer, and more likely to have dense breasts that make interpreting the mammogram more difficult. Among women in their 60s, who have a somewhat higher rate of breast cancer, the proportion of positive outcomes to harms are better:[9]”
    High-risk women are in a different position, of course.
    Here’s the page on breast self-exams:
    http://en.wikipedia.org/wiki/Breast_self-examination
    It is overwhelmingly negative.
    I guess this is exactly what we were hearing about during the health care debate with regard to some weaknesses of US medicine.

  41. Here’s the thing: I grant that Komen has done great things for breast cancer awareness. However, I feel that they are abusing the power and good will they have earned in order to enact their own political agenda. I am no longer willing to take the bad things they are doing in the name of the good. I refuse to be held hostage. Is my sister’s life in the hands of an organization like Komen’s? I shudder to think so.

  42. I agree with Wendy. I don’t care if they’ve buckled under public pressure (for now). They’ve revealed themselves to be a politically partisan organization who cares more about pushing a particular agenda (anti-abortion and anti-stem cell research) than they do about preventing or curing breast cancer. I don’t think I could trust them with my money or support them in good faith from here on out, and I’ll be actively avoiding pink ribbon stuff.

  43. They are going to get it (or not get it, if it is money) from both sides now. I would doubt that many pro life people knew about the planned parenthood connection before. Now, everybody does.

  44. MH,
    Yeah. This is one for the PR textbooks: how to alienate everybody within 48 hours.
    Wendy,
    Because I knew vaguely about the connection with PP, I was never a huge fan of Komen. I’m not big on charitable enterprises where it looks like the stuff (t-shirts, races, merchandising, etc.) looks like it’s eating up vast amounts of funds and energy, and that was rather obviously the case with Komen. (The fastest way to lose me as a donor is to choke my mailbox with expensive junk mail.)
    It strikes me as interesting that a lot of people who like PP only discovered that Komen was not all that after Komen dropped PP. And if Komen goes back to funding PP, a lot of those people will suddenly stop talking about the public awareness overkill, the branding overkill and the encouragement of overtesting. All will be forgiven. It looks to me a lot like a protection racket–as long as Komen forks over, they’re safe from major media attack.
    (I have a quick question for bj and MH (if applicable)–is the reduction in breast cancer deaths due more to screening or to better treatment? Because if it’s mostly due to better treatment, that whole “awareness” thing is a huge waste of time.)
    I lost two long posts last night where I was responding to Wendy’s question about Komen’s encouragement of breast exams. This has been a very educational news cycle for me, because previously, I thought that people who harped on overtesting for cancer were just being cost-cutting meanies. However, having combed over a couple of Wikipedia pieces on breast cancer screening, I am starting to see how dangerous overtesting is. On that Komen webpage Wendy cited upthread, Komen encourages average-risk women to start mammograms at 40. This is so wrong that it’s scary. Just that piece of advice alone is reason enough not to donate to Komen. The current standard for mammograms for average risk women is to start at 50, and even that comes with huge risks. I will quote a bit here from the Wikipedia article on breast cancer screening (I think it refers to mammography, but I’m only 90% sure):
    “If 1,000 women in their 50s are screened every year for ten years, the following outcomes are considered typical in the developed world:[8]
    –One woman’s life will be extended due to earlier detection of breast cancer.
    –2–10 women will be overdiagnosed and needlessly treated for a cancer that would have stopped growing on its own or otherwise caused no harm during the woman’s lifetime.
    –5–15 women will be treated for breast cancer, with the same outcome as if they had been detected after symptoms appeared.
    –250–500 will be incorrectly told they might have breast cancer (false positive).
    –125–250 will undergo breast biopsy.
    “The outcomes are worse for women in their 20s, 30s, and 40s, as they are far less likely to have a life-threatening breast cancer, and more likely to have dense breasts that make interpreting the mammogram more difficult. Among women in their 60s, who have a somewhat higher rate of breast cancer, the proportion of positive outcomes to harms are better:[9]”
    http://en.wikipedia.org/wiki/Breast_cancer_screening
    And Komen wants average-risk women in their 40s to do mammograms. Holy cow!
    I think the culprit here is the very understandable urge to “do something.” In the face of a deadly disease, it’s hard to deal with the fact that “doing something” can be worse than doing nothing.
    There’s an article here on the uselessness of breast self-examination:
    http://en.wikipedia.org/wiki/Breast_self-examination
    “In a large clinical trial involving more than 260,000 female Chinese factory workers, half were carefully taught by nurses at their factories to perform monthly breast self-exam, and the other half were not. The women taught self-exam detected more benign (normal or harmless lumps) or early-stage breast disease, but equal numbers of women died from breast cancer in each group.[2]”
    “Breast self-examinations are based on an incorrect theory of cancer development, which assumes steady growth of the tumor. According to breast cancer specialist Susan Love, “Breast cancer doesn’t work like that…it’s sneaky. You could examine yourself every day and suddenly find a walnut.”[6]”
    This is all kind of depressing, but on the other hand, it means that we don’t really need to feel guilty about not doing self-exams.

  45. “It strikes me as interesting that a lot of people who like PP only discovered that Komen was not all that after Komen dropped PP. And if Komen goes back to funding PP, a lot of those people will suddenly stop talking about the public awareness overkill, the branding overkill and the encouragement of overtesting. All will be forgiven. ”
    Yep, that’s what I’m worried about. However, I’ve found out a bunch of people, including my husband, who have never been fans of Komen and assumed they were a right-wing organization. Plus there’s the new movie, Pink Ribbons Inc., the makers of which are probably overjoyed to have coming out this month.

  46. Wendy,
    In related news, I was just talking to an elderly relative who has been complaining of neck pain. It may be just an injury (she was overdoing the firewood and hay bale hauling), but with your posts in mind, I encouraged her to see her doctor. (Her mother had breast cancer in her mid-80s, had surgery, lived into her 90s, and died of something else entirely.)

  47. There’s a list of leading causes of death for US women here (sorry–it’s for 2007):
    http://www.cdc.gov/women/lcod/
    They don’t break down the cancers, but cancer as a category is the #2 killer (heart disease being #1). That’s pretty well-known. More interesting is the fact that this order is reversed for Asian/Pacific Islander women and American Indian/Alaskan Native women–cancer is the biggest killer for them. I have no idea why that should be the case.

  48. I assume the difference is that Asian women of the ages in question in the US right now are disproportionately first generation immigrants with lower rates of heart disease your the usual reasons (diet, immigrants are healthier).
    I also assume that screening has played some role in reducing breast cancer deaths but that the effect is limited to specific groups with risk factors. I really don’t know for certain.

  49. “I’m curious. If you read things like this, do you still think opposing Komen is a bad idea?”
    Although I don’t want to be the banner carrier for Komen (I still don’t like the marketing oriented charity/mammography screening/stem cell research positions), I did not find the Daily Kos blurb convincing.
    The blurb complains about a few things but oneof them is the Komen position on the Breast & Cervical Cancer Prevention & Treatment Act of 2000 (Treatment act). Now, I can’t say what the Komen position was at the time or whether they secretly campaigned against Treatment Act. But, their position statement supports it now:
    http://www.komenadvocacy.org/content.aspx?id=62
    I can’t find any complaint about their support of access to care among poor women in the statement (and, it appears to me that they are advocating to fix a gap in the law, which limits treatment options based how the cancer is diagnosed). Of course, when talking about legislative lobbying, it’s important to know whether there are weasel words mixed into the official statement that make it sound good, when its not, and I could be educated about the wording. But, except secretively (which we also can’t know), Komen seems to support the Treatment act.
    The statement reads to me like they advocate for detection and treatment for poor women. Their willingness (before & now) to send funds the way of PP (or any other organization) if it furthers those goals is how I’ll judge them.

  50. Amy asked whether it’s better treatment or screening that’s relevant in breast cancer survival rates, as a lead to whether “awareness” has mattered. I don’t have any special insight into that answer (except to know that it is a very complicated one that would depend on lots of different interactions and measurements)
    However I do believe that awareness is about a lot more than screening. Awareness of screening is relevant, but so is awareness of treatment, willingness to be treated and a general demystification of the breast. It really wasn’t that long ago that breast cancer was shameful, that breasts were shameful. Komen has contributed to that removal of shame. And, awareness leads to better treatment options, in the most extreme case because it attracts scientists to diseases, to trying to do something about them.
    A case study is the AIDS patient advocacy, which I believe changed the course of treatment for that disease. I truly believed that there would be no treatment, during the epidemic, that the problem was scientifically intractable and the the solution was going to be a lot of death followed by potential immunization of high risk populations. The patient advocacy forced everyone to consider treatment. And, to my amazement, the scientists found one. Lots of different factors played a role, but I do think at least one “awareness” factor played an important role. I know of more than one researcher who switched fields (early in their careers) because decided they couldn’t send one more patient away from the clinic telling them that they could do nothing, that they had to try to figure out something. Personal awareness of the human cost of the suffering changed people’s research paths, sometimes that came through the patient in the clinic, or the sister who was a nurse, but some of it came from the ACTUP activist camped out in front of your research building or the story in the AIDS quilt.
    Awareness, though, plays its biggest role when people are “unaware” (like we were of AIDS, and we probably were of breast cancer, before Komen). Once people become aware, the battle for awareness becomes a zero sum game, and organizations need to shift focus to providing something more than mere awareness (like treatment, screening, research dollars, publicity).

  51. “Awareness, though, plays its biggest role when people are “unaware” (like we were of AIDS, and we probably were of breast cancer, before Komen). Once people become aware, the battle for awareness becomes a zero sum game, and organizations need to shift focus to providing something more than mere awareness (like treatment, screening, research dollars, publicity).”
    Good point.

  52. Awareness is constantly needed, not to simply educate people about the problem for te first time, but to keep the issue on the top of the agenda. It leads indirectly to pressure on congress. It creates solidarity. Other groups, like autism groups, are copying them for a good reason. It is a very effective political strategy.

  53. “…but to keep the issue on the top of the agenda. It leads indirectly to pressure on congress.”
    But, as bj points out, this is a zero sum game. Every important issue cannot be “on the top of the agenda.” And breast cancer is not the top killer for women, by a long stretch. At least for white, black and Hispanic women, the top killer is heart disease (hence the new red campaign for women and heart disease).
    Also, although breast cancer is more diagnosed among women than lung cancer, lung cancer is the bigger killer of women.
    Interestingly, the rates of different cancers vary immensely according to race and ethnicity.
    http://www.cdc.gov/Features/dsWomenTop10Cancers/

  54. You should probably look at healthy years of life lost or some other related metric. I tried, but it started to seem like work so I stopped.

  55. But it doesn’t work that way. People won’t give to lung cancer, if the pink ribbons go away. They won’t give to anything. People have no idea what the biggest medical threat is out there. without some organized group asking them for money or making them feel guilty or reminding them to give, they will give to nothing.

  56. People won’t give to lung cancer because they assume that smoking is somehow optional for everybody and not the best fatal thing ever.
    But corporations and other risk-adverse, publicity-seeking bodies need a way to say “We care about women but not in any way that pisses you* off.” They’ll find another charity that takes whatever portion of that market Komen losses. It may not be a medical cause and, if it is, it may not be nearly as effective.
    Anyway, I can’t help but feel I’m watching the practice run for how health care reform falls apart even if somebody can make an otherwise workable plan.
    *You being at least 90% of the women who are likely to be able to buy something.

  57. “People have no idea what the biggest medical threat is out there. without some organized group asking them for money or making them feel guilty or reminding them to give, they will give to nothing.
    Only 1 in 5 women diagnosed with breast cancer dies of it. The numbers for just about every other cancer are much less favorable. A woman diagnosed with lung cancer has 3 in 4 chance of dying from it. A woman with colorectal cancer has over a 1 in 3 chance of dying from it. The gynecologic cancers kill 1 in 3 women diagnosed with them. Breast cancer’s better showing is either a tribute to modern medicine, or evidence that breast cancer is being over-tested for and over-treated.
    I was also very surprised to discover that all the gynecologic cancers taken together (uterus, ovaries, cervix, etc.) kill about the same number of women as colorectal cancer alone.
    (All numbers are calculated from the CDC’s site that I used earlier.)

  58. Breast cancer’s better showing is either a tribute to modern medicine, or evidence that breast cancer is being over-tested for and over-treated.
    Not really. Some cancers are just more treatable inherently. Focusing on them makes sense in certain cases as $50,000 spent there might save a life but $5,000,000 won’t save a life from another cancer. Lung cancer, for example, must be harder to treat because the pulmonary equivalent of a radical mastectomy is 100% fatal after 35 seconds.

  59. “Anyway, I can’t help but feel I’m watching the practice run for how health care reform falls apart even if somebody can make an otherwise workable plan.”
    In what way? Because the process of allocating funds for different ailments is going to be so political?
    “People won’t give to lung cancer because they assume that smoking is somehow optional for everybody and not the best fatal thing ever.”
    That’s a bit garbled, but yeah, a lot of people think smokers deserve whatever they have coming.
    I was doing a little reading just now, and interestingly, it looks like lung cancer in women is a very different thing from lung cancer in men.
    http://www.cancer.net/patient/All+About+Cancer/Cancer.Net+Feature+Articles/Cancer+Screening+and+Prevention/Women+and+Lung+Cancer?cpsextcurrchannel=1
    Also, non-smokers get lung caner, too.
    “But even though it’s less common, some people who don’t smoke get lung cancer too. Every year, 16,000 to 24,000 Americans die of lung cancer even though they have never smoked. If lung cancer in “never smokers” (defined by researchers as people who have smoked fewer than 100 cigarettes in their lifetime) had its own category separate from lung cancer in smokers, it would rank among the top 10 fatal cancers in the United States.”
    http://www.cancer.org/Cancer/news/lung-cancer-also-affects-nonsmokers
    (Those are mixed gender stats, but still interesting.)

  60. “…but to keep the issue on the top of the agenda. It leads indirectly to pressure on congress.”
    But, as bj points out, this is a zero sum game. Every important issue cannot be “on the top of the agenda.” And breast cancer is not the top killer for women, by a long stretch.

    I agree in general. I’m not sure what standard we are using to determine what needs to be “on the top of the agenda,” and why breast cancer needs to be there. It is certainly an important issue, but I’m not hearing the argument of why society will be worse off if breast cancer drops below heart disease or other diseases that are currently more stigmatized (lung cancer for non-smokers, liver disease for non-drinkers, etc.)
    I don’t even know what should be the right standard, even if I was named U.S. Fund Allocation Czar (or, even better, attain the godlike powers of a United Way employee). I’m pretty sure that autism doesn’t fall in the Top 100 Killers of Women, but it is still and important issue that is likely more underfunded than breast cancer research.
    Also, what should the division be between “awareness,” “research,” and “treatment.” I know that in the late 1980s, when AIDS was on the top of the agenda, there was a big battle between people who wanted to money to go to “finding a cure” and those who thought that was too far in the distance, and wanted more money diverted to helping then-current AIDS sufferers. Meanwhile, the “awareness” money all got largely allocated to raise awareness of people who might contribute money, and not to people who might be more likely to become infected.

  61. “it started to seem like work so I stopped. ”
    O, MH, you are a person after my own heart. The thought of looking up statistics to see if I agree with Laura and Amy P is much too daunting. You guys work it out and let me know the answer.
    I have a personal, aesthetic view (these don’t require research): I hate awareness campaigns and would never wear a ribbon for anything. So the Komen Foundation does not have high salience for me.

  62. in her new book, Pink Ribbon Blues. Sulik argues that despite the $1 billion raised over the years by pink-clad volunteers on hikes, despite the greater billions the U.S. plows into related research each year, science has failed to make any real progress in the fight against breast cancer. . . . The risk of dying from the disease, upon diagnosis, decreased just 0.05 percent from 1990 to 2005. A woman with invasive breast cancer today will be bombarded with many more treatments and spend a lot more than her grandmother might have on care, but she’ll have about the same chance of dying from the illness as women did 50 years ago.
    http://www.slate.com/articles/double_x/doublex/2010/10/sink_pink.single.html

  63. “The risk of dying from the disease, upon diagnosis, decreased just 0.05 percent from 1990 to 2005. A woman with invasive breast cancer today will be bombarded with many more treatments and spend a lot more than her grandmother might have on care, but she’ll have about the same chance of dying from the illness as women did 50 years ago.”
    Holy cow.
    bj, does that sound right? I can see a couple of possible issues with that paragraph. For one, shouldn’t we be also interested in the average woman’s risk of dying of breast cancer (not just the risk of death on diagnosis)? Also, aside from the risk of dying, are there other things that have improved? Is the community more supportive? Are the treatments themselves less punishing to the patient?
    I expect that Komen has succeeded in creating a lot of community support and sympathy.

  64. I won’t wear ribbons, either. But, my daughter did wear pink on pink ribbon day (as part of their “awareness” week, in which they wore different colors for different causes each day of the week). The last cause was their school.
    Watching the “color days” in operation was interesting. One child (male) finds the ribbon moving. Wearing it (and wearing pink) is his memorial to a loved relative who died of breast cancer. It was meaningful for him. For others, it was a puzzle, to figure out how to distribute their close over the week to wear the right colors. For others, it was a burden to avoid. For others, it was simply something to ignore.
    All in all, it seems like it worked OK, though I did talk to people who might feel burdened.

  65. MH,
    Am I reading it correctly that there was a 2.2% drop in mortality for breast cancer between 1990 and 2008?
    Is that a significant drop, or not impressive, considering all the money spent?

  66. The revised sentence suggests that what Planned Parenthood does with Komen’s money is not particularly valuable. Then again, I guess it isn’t much money.

  67. I’ll quote the correction MH gives for the benefit of people who don’t want to click through.
    The original sentence was: “The absolute risk of dying from breast cancer has decreased about 0.05 percent from 1990 to 2005.”
    That sentence has been corrected to: “The absolute risk of dying from breast cancer has decreased about 0.05 percent from 1990 to 2005 due to screening.” (And then there’s a note explaining that the screening referred to is mammography.)
    So the reduction in breast cancer mortality is due to treatment, rather than early detection.

  68. “Findings from a new study, published online Thursday in the British Medical Journal (BMJ), suggest that the decline in the number of breast cancer deaths that has occurred in developed countries over the past two decades is due more to better treatment and improvements in the efficiency of health-care systems than to breast cancer screening.”
    http://www.minnpost.com/healthblog/2011/07/29/30421/better_treatments_not_mammography_screening_are_behind_drop_in_breast_cancer_deaths_study_finds

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