Don’t Make Promises You Can’t Keep – Especially in Health

You’ve heard or seen them: the ads or promotions for organizations promising that, if you’ll just support them, they will cure or eradicate any disease you care about. In ALS, it’s the ALS Association promising to “create a world without ALS.”  That’s a bold promise, since there is no effective treatment for ALS, and prevention strategies are missing in action. So where will this “world without ALS” come from?

In breast cancer in particular –and cancer in general — the promises take many forms; for example:

An organization in Northern California calls itself “Zero Breast Cancer,” claiming to be “looking forward to a world without breast cancer.” http://www.zerobreastcancer.org/ This goal is, to say the least, interesting, since breast cancer has been with us since ancient Greek civilization, which is where the word “cancer” comes from.

The National Breast Cancer Coalition has “Set a Deadline for the End of Breast Cancer.” http://www.breastcancerdeadline2020.org/. If you’re wondering what date to mark on your calendars, the deadline is set for January 1, 2020. This promise echoes the assurances given when the National Cancer Institute was created in 1937. The answer to cancer has always been just around the corner. It also reminds me of a time several years back that Susan Love, the famous breast cancer surgeon, announced that she would solve the breast cancer problem in 10 years. When I asked her when we should start counting, she gave the answer that drives most of these kinds of promises. She said, “We start counting when we’ve raised all the money.”

ASCO – the American Society of Clinical Oncology and the largest organization representing cancer physicians in the world — is trying to raise money through what they are calling the Conquer Cancer Foundation, which describes itself as “committed to a world free from the fear of cancer.” My read is that they want to be sure there are treatments available when people get cancer (which is where cancer docs make their profits, of course), so that cancer is a disease that is feared less, not experienced less.

The Susan G. Komen For the Cure Foundation is “fighting every minute of every day to finish what we started and achieve our vision of a world without breast cancer.” http://ww5.komen.org/AboutUs/OurWork.html Of course, since the focus of the Komen Foundation is primarily on detection through mammography screening, it’s hard to understand how we get from finding cancer to a world without the disease. Also noteworthy is how Komen uses the word “cure” (they have trademarked the phase “for the cure” and they aggressively enforce that mark. See http://www.newsy.com/videos/for-the-cure-controversy-over-pink-trademarking/).  They repeatedly use the word “cure” in a context where prevention is more appropriate. For example, Komen claims thatWithout a cure, 1 in 8 women in the U.S. will continue to be diagnosed with breast cancer.” Of course, even with “a cure” women will still get breast cancer – otherwise they won’t need a cure.

I recognize that hope is important. But do we have to lie to people so they’ll hope for the things they most desire when they or their loved ones are sick?

I cannot tell you how many people I met in my years as a breast cancer activist who believed that “the cure” was within reach, only a few years away if we just threw more money at the problem. This was not a surprising view, given the kind of information most organizations put out about cancer. It’s this kind of information, after all, that drives people to want to support cancer research.

A more rational view – one that explores the assumptions and constraints underlying cancer research and puts the cancer research effort in perspective — is hard, but not impossible to find. Breast Cancer Action’s Cancer Policy Perspective provides such a view: http://bcaction.org/cancer-policy-perspective/. It will take longer to read than this blog, but nothing is a simple as the folks making these promises would like us to think.

Really, is honesty when it comes to what can be accomplished in health really so much to ask?

© Barbara A. Brenner March, 2011

 

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

14 Responses to Don’t Make Promises You Can’t Keep – Especially in Health

  1. BobO says:

    When I was in high school, we were taught to question just about everything. The example we were given: “Ivory Soap. 99 and 44/100% pure” Pure what? I love the way you dissect the thought behind the banner slogans. Not even with cynicism, but honesty.

  2. Jo Ann madigan says:

    I love this blog! BobO said it well.

  3. Irma Herrera says:

    I love the word asco which in Spanish means revolting, disgusting, ghastly. And it really is ghastly that ASCO wants to free us of the fear of cancer, which of course as BB points out means we won’t be scared of it cause ASCO members will be able to cure it. Of course we want good effective treatments. Ah . . . so much better if we could get rid of all the awful things in our environment and which we ingest which likely contribute to our getting cancer. Keep up the great work BB, you always get me athinkin!!

  4. bella August says:

    Thanks much for putting into such clear and forceful words the initial responsethat I had to hearing about NBCC “new direction.” To a very dear friend who is on the NBCC Board, I said that it would have been preferable to say “make breast cancer into a chronic disease, rather than a fatal one,” and focus on true prevention. For many years, I have been alienated from NBCC because of their connections to pharmaceutical and other corporate sponsors. It was BCA’s principled position on that issue, and willingness to make a radical analysis, that made me love it.

    Bella

    • bbzinger says:

      Bella,

      My pleasure. When I was ED of Breast Cancer Action, I couldn’t say what I thought out loud. Very freeing from me to have this outlet, and thanks for your support.

      xxoo
      BB

  5. Hilary Crosby says:

    I don’t think honesty is too much for ask for about anything!

  6. mary Whitehead says:

    Hi, Barbara, and may sunny rays bring you joy this spring! What’s missing in most all of the “guarantees” for “curing” BC is critical thinking. Tis amazing “how far we have come”, granted, but there is NO perspective on how far we have to GO. When we marvel at the various original thinkers in BC, like Elwood Jensen, who, when planning to climb the Matterhorn, looked at the mountain, noted that most people took “the traditional route”. When he made his presentation in the 1950′s, about his new discovery, there were 4 people in the room. Most people espousing their passion for “the cure” have minimal knowledge, it seems, about the history of the disease, and this is the foundation on which the future will be built. My fear is that, since the “industry” is so entrenched, it will be almost impossible to make changes in THOUGHT which might facilitate real progress. Everyone wants to make a buck on the deal. and patients – people – should come first.

    • Dzhavid says:

      I am third generation left basret cancer. I had a radical mastectomy in 1989. I have been an operating room nurse since 1965. Trust me! We still slice,dice, chemo,radiate no cure. Women are still a test group. Some of us have now lived long enough to have long term complications that no-one center deals with. Dr. Touhy at Cleveland Clinics why not support his research for a vaccine? Why not a blood test? Not one more dime to Pink It is insane and humiliating! How do we come together to make our voices heard? I live in Tucson and think it is time for us’Warmest Regards,Eileen

  7. mary Whitehead says:

    Barbara: For others who might read the posts, I felt I should mention that Elwood Jenson was the scientist who discovered estrogen receptors – where would we be if he had not done HIS work?

  8. Mary D says:

    Hi Barbara,
    False promises equal false hope. Well-written (not surprisingly!) post. Of course honesty isn’t too much to ask unless there are too many people invested — financially, egotistically, emotionally, etc. — in the dishonest approach. I’m so happy you’re still out there fighting!

  9. Cancer Damaged Party Pooper says:

    Powerful entities getting rich off cancer don’t want to tell the truth, but in my experience few people want to hear the truth either. It’s just too grim. Hence we remain in a national state of denial about cancer. That’s precisely why it’s so important to keep speaking the truth, while we can. Thank you, Barbara. Rock on.

  10. Britta says:

    Barbara, this is great. I’m so glad you’re blogging!

    A few years ago, I was at a Take Back the Night Rally, and one of the speakers got up on the stage and announced that we should envision a day when “sexual assault is rare and unusual!” At the time, I was critical, sarcastically thinking to myself, ‘Uh, how about nonexistent! Dream big!’ But your post got me thinking about it differently. Sexual assault will most likely never be gone entirely, nor will cancer, so we might as well be honest and realistic about it.

    I used to be an optimist and idealist, nearly a Pollyanna, but I’ve changed since being dx’d with breast cancer at the age of 30. The radiologist who examined the ultrasound of my lump told me he was “98% sure” it was benign, but that I should get a biopsy so he could “prove himself right.” The surgeon, in the middle of the biopsy, which he had first spent 20 minutes trying to talk me out of, told me he was “99% sure” the lump was benign. I felt bitter and duped, when it turned out to be invasive cancer.

    It’s silly for Komen and others to say they are fighting for a “world without breast cancer,” when they’re not focusing on prevention at all. Cancer will not go away, as long as big corporations continue to pollute the air, water, and soil with carcinogenic chemicals, and carcinogenic products continue to be produced and sold, and as long as the government does nothing to test or regulate or ban these toxins. We don’t need more mammograms – that’s not the point!

  11. Old Chuck says:

    Finally an honest discussion about some of these fund raising catch phrases. You gotta be kidding about SK copyrighting “the cure.” Unfortunately there are many who unknowingly believe these catch phrases like “the cure.” I’m told that it gives patients hope and of course enlists them in these patient driven pyramid fundraising schemes. What is wrong with the truth? Yeah, I have one of those terminal illnesses for which “the cure” is bantered around like snow flakes in a blizzard.

  12. RKN says:

    I have read that the odds that you will get ALS are very similar to the odds that you will get MS; however, with the treatments that have been provided to those with MS over the last half century, they are now able to live close to their normal life expectancies (certainly not without significant challenges). There are many more people with MS in our midst at any moment because of treatments that do not cure but do extend life expectancy. I was also told by representatives of ALSA that the number of people living with a disease is the gold standard by which disease priorities are measured by government research. Talk about a catch-22. They can strive for a world without ALS, but they can’t come up with some ways to explain the urgency of a disease with a high incidence and low prevalence. If we quietly accept the “gold standard,” then ALS will never get the research attention needed to develop some effective treatments. I don’t always equate research “attention” to research dollars. We need for ALS to be in the minds of scientists (including the significant number of government-funded researchers), and our scientists and regulators need to understand the urgency of the ticking ALS clock. It needs to be on the front burner.I’m no Einstein, but it seems to me that our major ALS organizations (ALSA, MDA, ALSTDI, Project ALS) continue to do the same things over and over with the expectation that something around the next corner will work.

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