Isn’t it time to change the message?

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Those of you reading this blog are already living in the “information age.” Seems to me that as information changes, those shifts should influence how we think about and talk about issues. Seems logical, no?

Unfortunately, this logic doesn’t seem to be guiding either the Susan G. Komen for the Cure Foundation or ALS Association, as far as I can tell. What these two organizations have in common is that they believe they are the only real players in the non-profit world of the diseases they address. In the case of the ALS Association, they are (sadly) correct. But whether they are right on wrong on their self perceptions, shouldn’t these organizations want to help the public understand the illnesses they address? Seems to me like that’s not so important to them..

Those of you who know me know I have long been interested in breast cancer, and am something of a expert on the topic.

I also take a particular interest in ALS, because I now have the disease. I’ve been reading a number of articles recently about head injuries (often in NFL football players) that result in motor-degeneration symptoms similar to ALS, but not the same disease. What’s the new information here? Well, it seems that Lou Gehrig — the mascot of the ALS Association (whose tag line reads: “Fighting Lou Gehrig’s Disease”) — may not have had ALS. Seems he played injured – often with concussions — and was famous for doing so.

When this news began to emerge, the chief scientific advisor for the ALS Association was quoted as saying something along the lines of, “It would be terrible to lose Lou Gehrig as a symbol of ALS, since he helps people understand what kind of disease it is.”

Seems to me that if it turns out that the man on whom you have built your organization didn’t have the disease that is its focus, it’s time to rethink your message, rather than bemoan the loss of your symbol.

The Susan G. Komen for the Cure Foundation (hereafter “Komen”) seems to have similar problem. As we have learned more and more about breast cancer, it’s become clear that “early” detection with mammography only works for some women. For a clear explanation of what “early detection” means – and doesn’t – in breast cancer check out http://bcaction.org/policy-on-breast-cancer-screening-and-early-detection/

When Komen started– it was then called The Susan G. Komen Breast Cancer Foundation—its message was “early detection is your best prevention.” That struck people who thought logically as incredibly wrong-headed, since if you were finding something “early” you certainly weren’t preventing it.

That message still prevails in some communities, where young women seek mammograms because they have heard it will “prevent” breast cancer, and others are stunned to find they have a diagnosis when they recently had a mammogram.

Komen, under pressure from breast cancer activists, changed their message on mammograms to “early detection is your best protection.” That’s not much better, because mammograms don’t protect you against breast cancer, though, in some cases, if combined with appropriate and timely treatment, they can protect you from dying of breast cancer.

One of the consequences of breast cancer’s “popularity” is that, for some time now, there has been a great deal of money spent on research into the disease. Appropriately, some of that research has been spent on mammography screening.

As the information from those studies has emerged, it has become clear that the messages that the public has been receiving about mammograms have been so over-simplified that women both overestimate the benefits of the technology, and fail to understand the limits of the concept of “early detection.”

Komen has long led the way in what the public understands (and doesn’t) about breast cancer. What has Komen done as this information has emerged? They’ve reinforced their old messages, with their leader, Nancy Brinker, arguing that it would be too confusing to women to change the message now. Interesting, coming from the person who spearheaded the confusion in the first place.

I often hear the argument that we can’t discourage people from getting mammograms because, for poor women, mammography screening is often the only way they get health care. I understand this problem, but I don’t think we can let all of our conversations and understanding of breast cancer rest on mammography’s shoulders. The real issue for poor women and all people who are medically underserved is access to comprehensive, affordable health care. These folks are as entitled as the rest of us to messages about health that take into account the information available.

Oversimplifying is dangerous, especially when information is available that would help people understand better the diseases that affect or may someday affect them.

© Barbara A. Brenner  March, 2011

This entry was posted in ALS Treatment, Breast Cancer, Medical Science. Bookmark the permalink.

51 Responses to Isn’t it time to change the message?

  1. Kathy Comstock says:

    Barbara,

    You make a very good point. You don’t change something if it’s not broke. But in this case even Dr Oz had a segment on thyroid cancer from exposure to Mammogram’s. (plural)
    You also can’t push a rope, but you can frazzle it. At some point they will not be able to deny the TRUTH.
    I love YOU.
    KEEP UP THE FIGHT

  2. mary Whitehead says:

    Continuing to send warm thoughts to you, and lightning bolts against your disease. I’m surprised that The ALS has not asked for your input, since you made so many strides in the BC field. But you are surely challenged now, and not finished, by any means! Keep posting, and I shall keep reading. Many hugs from the East Coast!!! Mary

  3. BobO says:

    On the ALS side, there is a new group, called Young Faces of ALS who are trying to put a real face on this disease. Lou Gehrig died nearly 70 years ago. This is a group of young people, all under 30, who carry a diagnosis of ALS. They are living with the disease now, as are many others over the age of 30. Whether or not Lou Gehrig had Lou Gehrig’s disease, maybe it is time to retire him as the symbol and focus on the current realities.

  4. Lisa Greenberg says:

    I really liked this post. To some extent, I think that the problems you identify with Komen and the ALS Assn. are typical, if regrettable, examples of how organizations, and even individuals, function – i.e., with limited flexibility and ability to change, despite new input.
    Best,
    Lisa

  5. Nora Cody says:

    @Lisa, one of the reasons these organizations are resistant to change is they have a vested interest — because of the pharmaceutical companies that fund them — in presenting limited information… Barbara, can you tell us more about the ALS Association and their sources of funding? Keep it up, you are brilliant as always and loved by many. Nora

  6. nora graham says:

    “…but I don’t think we can let all of our conversations and understanding of breast cancer rest on mammography’s shoulders. The real issue for poor women and all people who are medically underserved is access to comprehensive, affordable health care. …”

    Yes of course– but what does that early access offer, except mammography– which is all women want (plus exam) in order to find out if they have a lump.?

    XXX Nora

    • bbzinger says:

      The point of my blog is that women need access to lots of things that mammograms won’t get them when it comes to health care, and we should stop trying to make sure that mammograms are they way they get them. It won’t work.

  7. Tuelay says:

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  8. Roberta Gelb says:

    Thank you for putting this into perspective in such a clear way. I know you would be delighted to know that some people are now coming to me to ask which breast cancer organizations they should contribute. Although I think it is hard to overcome the PR and advertising these organizations do to promote their own agenda, blogs like yours really help to get the word out so that people start thinking more critically.

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