tag:blogger.com,1999:blog-5093171013716050318.post5572449893098915694..comments2023-10-31T06:34:57.334-04:00Comments on The Cancer Culture Chronicles: Komen By The Numbers: Education in FocusCancerCultureChronicleshttp://www.blogger.com/profile/07650364997423007994noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-5093171013716050318.post-56047626781752471602011-02-22T14:14:15.597-05:002011-02-22T14:14:15.597-05:00Wow, this is definitely investigational journalism...Wow, this is definitely investigational journalism. I think you should pitch this to the NY Times and blow the cover off this issue. Or maybe you could do an editorial piece. I agree; how many pretty pamphlets do you need? Let's make research the main focus.Tami Boehmerhttp://www.miraclesurvivors.comnoreply@blogger.comtag:blogger.com,1999:blog-5093171013716050318.post-69412708013291534572011-02-11T11:05:11.103-05:002011-02-11T11:05:11.103-05:00Kathi - thanks so much for your very informative a...Kathi - thanks so much for your very informative and insightful comment. I absolutely agree with you that coordination is imperative in avoiding the waste and duplication of efforts which is currently occurring. And I wholeheartedly agree with you that a central body like the CDC would be the logical choice for taking on the mission of cancer education for all. Can we ever imagine that such a spirit of cooperation could exist between all current stakeholders to pass the education mantle on? It would mean setting self-interests aside and focussing on a common goal. It could be this simple, but unfortunately probably isn't.CancerCultureChronicleshttps://www.blogger.com/profile/07650364997423007994noreply@blogger.comtag:blogger.com,1999:blog-5093171013716050318.post-22115160709463582862011-02-10T17:11:48.521-05:002011-02-10T17:11:48.521-05:00Anna, another illuminating post. Thanks for all t...Anna, another illuminating post. Thanks for all the work that went into this.<br /><br />I wrote a post myself not too long ago that presented some information which, put together with your findings in this post, just heightens my frustration, both as a survivor and a health care clinician, about the state of public education about any and all types of cancer.<br /><br />The need for coordination is key. And I couldn't agree more that all fundraising organizations that provide information and education about cancer may be missing the point and duplicating efforts that don't really get to the heart of the matter.<br /><br />Nothing is going to change fundamentally for those of us with cancer if health care providers themselves are not better educated about cancer, from prevention to screening to treatment to post-treatment side effects to the long-term consequences of having and living with cancer. Your own experience illustrates the urgent need for primary caregivers, as well as oncological specialists, to be much more thoroughly acquainted with cancer. The health care system itself needs to change to allow for doctors, nurses and other first-line clinicians to be able to take the time to provide appropriate and thorough information at every step of the way, for reasons I don't think I need to explain here.<br /><br />In my most recent post about this thorny subject, <a href="http://accidentalamazon.com/blog/2010/12/18/not-all-better-a-survivorship-toolbox/" rel="nofollow">Not All Better - A Survivorship Toolbox</a>, I discovered that the Centers for Disease Control has been developing a National Action Plan for Cancer Survivorship, to chart “a course for how the public health community can address cancer [treatment &] survivorship more effectively and comprehensively and focus on improving the quality of life for survivors.” The plan identifies priorities that include establishing clinical practice guidelines as well as tools for enabling patients to advocate for ourselves more effectively. It seems to me that such an organization is in a much better position to coordinate and lead such an effort, and that private, non-profit groups who are truly dedicated to making a meaninful difference in educating the public should hop on board instead of reinventing a wheel that they are not, in fact, well-equipped to invent. <br /><br />I could go on, but I'll stop here. And perhaps write another post myself!!Kathihttp://accidentalamazon.com/noreply@blogger.comtag:blogger.com,1999:blog-5093171013716050318.post-81833401145891047382011-02-10T14:02:01.361-05:002011-02-10T14:02:01.361-05:00Dear all...thank you all for your comments.
Gay...Dear all...thank you all for your comments. <br /><br />Gayle - thanks for the republish, and yes, the numbers are quite astronomical and yes there is much more to overhead than meets the eye. Hopefully the numbers are clearer to people in the formats I have produced, rather than trying to read standard financial statements. The numbers really do tell a story.<br /><br />Sarah - there is so much duplication of effort in providing educational resources. Obviously education is an extremely important facet, but why can't the charities all come to the table on this and just agree to share. My stomach aches when I think of all the money that could be saved and funneled into research.<br /><br />Nancy - I still don't know what it is about my intuition. All I know is that it hasn't failed me yet. I'm glad that I was able to highlight the important numbers for you. Now it's a question of what we do with all of this information. Keep agitating for change I say!<br /><br />Stacey - I think you and millions of other people would agree that education shouldn't come before research in terms of spending priorities. We can no longer afford to get our priorities wrong, or this continued duplication of efforts with respect to this disease. I know it, you know it, so what's the problem here?CancerCultureChronicleshttps://www.blogger.com/profile/07650364997423007994noreply@blogger.comtag:blogger.com,1999:blog-5093171013716050318.post-14988216574954133072011-02-10T13:02:58.572-05:002011-02-10T13:02:58.572-05:00Anna, thank you again for sorting through all the ...Anna, thank you again for sorting through all the numbers to explain it so clearly. It's frustrating on many levels begining with the sheer amount of money not going toward research. Why isn't it? Ok, Komen sees education as part of the cure, but to the extent they're spending their dollars? Doesn't make sense, and you're right about the waste. <br /><br />Once again, so well done. Thank.Staceyhttps://www.blogger.com/profile/03473975559820773868noreply@blogger.comtag:blogger.com,1999:blog-5093171013716050318.post-40958484650574969052011-02-10T10:27:31.771-05:002011-02-10T10:27:31.771-05:00Anna, First of all, thanks once again for all this...Anna, First of all, thanks once again for all this research and hard work you have put into this. Secondly, I'm impressed with how you were so in tune with your body back at the time of your diagnosis. You knew something was up. It's a good thing you had that intuition. Lastly, I had no idea about these figures. It does indeed seem obvious too much is spent on education (although it is very important) and not enough on research. And the point about organizations duplicating/wasting time and money, is a very valid one. I'm not good at doing the figuring myself, but I can see the facts when put in front of me!! Thanks again for highlighting this info.nancyspointhttp://www.nancyspoint.comnoreply@blogger.comtag:blogger.com,1999:blog-5093171013716050318.post-43677495002039622602011-02-09T11:09:07.377-05:002011-02-09T11:09:07.377-05:00"When are our breast cancer fundraisers going..."When are our breast cancer fundraisers going to realize the economic synergies of sharing and integrating their Education programs? "<br /><br />Anna - I absolutely couldn't agree more. Here in the UK when I see yet another 'new' campaign for awareness or whatever by yet another breast cancer charity - that looks pretty much like the other pink branded one by the way - I have thought exactly the same myself. They are all duplicating work and wasting all that money doing it. Surely they could achieve more if they pooled resources?Sarah Hortonhttps://www.blogger.com/profile/05653557496702540713noreply@blogger.comtag:blogger.com,1999:blog-5093171013716050318.post-14850452840269771902011-02-09T10:42:19.870-05:002011-02-09T10:42:19.870-05:00Anna: What you have uncovered in the audited finan...Anna: What you have uncovered in the audited financial reports is eye-opening. It's unbelievable how much allocation is focused in the education area, and how much overhead is buried in the programs. The overhead for the organization is clearly much higher than would first appear. Thank you for this work. Essay is republished on PRB.Gayle Sulikhttp://www.pinkribbonblues.orgnoreply@blogger.com