Komen Koolaid . . .

11 Mar

So, Julie of Orange County Komen sent me an email in response to my email in response to her email in response to my blog post: Komen Please Leave Me Alone

Here is Julie’s/Komen’s response to me (first, you may want to read the post below, from Friday):

“Hi Lisa,

I was not the person “chosen” to respond to you. In my position, it is my responsibility to be in the know about what is being said about our organization; your blog past came to me in an alert as did the post you shared with everyone today. My concern was not just to remove you from our list (however it is also my responsibility, along with one other person here to make sure people who do not wish to receive our information are removed from our list), but to reach out to you as a genuine human being, but as someone who can understand the frustration of trying to get help.

Again, I’m very sorry for the response you got from our organization in 2009. I was not here at the time and like I said, just a person trying to do what they can now. Tell me how I can help and I’m happy to do what I can.

 My contact info is below:

Julie A. Guevara

Manager of Marketing & Communications

Orange County Affiliate of Susan G. Komen for the Cure

3191-A Airport Loop Drive

Costa Mesa, CA 92626

T: 714.957.9157 Ext. 30 | F: 714-619-2678

Our Vision: A World Without Breast Cancer

BEST SCIENCE. BOLDEST COMMUNITY. BIGGEST IMPACT.

WE ARE THE CURE”

First of all, I love the “Best Science, Boldest Community, Biggest Impact. WE ARE THE CURE”(sic)

English: Mahindra 6030 Turbo tractor in downto...

I wonder how many women rushed out to get a mammogram after seeing this pink tractor . . . am I the only one who thinks pink porta-potties, tractors, golf carts, etc. in the name of "awareness" are a waste of money? Of course i am not. Sigh.

So there you have it. NO ONE from financial assistance can bother to get in touch with me, to answer my calls, to email me back, etc. But, it is apparently Julie’s “responsibility to be in the know about what is being said about our (komen) organization” and her other job is apparently “along with one other person” to make sure they remove me from their email list. Wow. Now that seems like a great use of “race for the cure” (TM – wouldn’t want SGK to sue me) dollars, doesn’t it?

Okay, so, giving Julie the benefit of the doubt here – she says she was not “chosen” by Komen to contact me and was instead contacting me as a “a genuine human being, but (sic) as someone who can understand the frustration of trying to get help” (her words, not really sure about the grammar here, but, I think she is simply trying to say that she cares).

Okay, well then DO something. FIX what is clearly BROKEN. Komen claims to provide financial assistance to breast cancer patients, provides a number for breast cancer patients to call – but, NO ONE ANSWERS the phone number!!! HELLO???

I am sorry Julie, but, I am unimpressed with your response. And as far as your asking me what you can do to help, I think I have made it pretty clear in my prior email to you. And, in fact, I asked you what YOU could do to help me NOW (since you said that you wished Komen could help me now; wished Komen could somehow “rectify the situation”).

And, still you reply with – let me know how I can help you? I find this disingenuous. Your organization exhausts me. It is smoke and mirrors and a bunch (in my experience) of getting the run around. I asked YOU how you could help me. I told you what my needs at this time are . . . and I got the above reply. Do I expect Komen to jump in and pay all of my bills? No, but, if you truly care, then why is there no interest on your part to at least look into the broken phone number, the fact that there is no form on your website or email for cancer patients to contact you for financial assistance – and yet your organization brags about providing financial assistance to breast cancer patients in need. Please understand this: your organization invited me to seek financial assistance through Komen’s financial assistance program. I got no response ever. I called over 100 times. My story is NOT unique. I have heard from many women who were treated the same way.

Instead, I feel you have just sent me a defensive reply about how you were not employed by Komen at the time I originally sought help. So what? You work for them now. I realize this may all be out of your job description – but, the very fact that this may be the case, shows how broken Komen has become.

But truly, this is my favorite quote from Julie’s email:

“Again, I’m very sorry for the response you got from our organization in 2009″

Response? Julie, I did NOT GET A RESPONSE IN 2009, or in 2010, or in 2011.

I told you before that I was not angry with you (in my previous email). But, I have to say that now, I am a little angry with you. I don’t like the spin, I don’t like the fact that I am hearing from someone from marketing and PR instead of someone who is in a position to address my experience.

I think you have simply drunk from the Komen KoolAid.

If you truly want to help me, truly want to make a difference in some breast cancer patient’s life, then work on fixing the problem. And, if you are not in a position to do so (I understand that your job is in marketing and PR and to search out the web for what is said about Komen – which right now must be keeping you mighty busy) then get this in front of a person who CAN fix the problem.

I will be sure to include the appropriate tags for this post so that you get an alert as soon as possible.

10 Responses to “Komen Koolaid . . .”

  1. Sandy Gougis March 11, 2012 at 9:23 AM #

    Lisa,

    I found this amusing and hope you will, too. My color blind husband came home with pink breath mint drops. (“Those are pink?” he asked when I told him.) Sure enough, they’re not just pink, they’re Komen labeled. He reports they taste awful, “Like glazed donuts and penicillin.”

    “What does penicillin taste like?”

    He pointed at the tiny bottle. “Like that.”

    We had a good laugh. It appears that Komen can’t even get breath mint drops right. Or, more likely, they should be more scrupulous about what they brand.

    Love,
    Sandy

    • cancerfree2b March 11, 2012 at 9:48 AM #

      I love it Sandy!

      Thank you for sharing, very funny 🙂

      I miss you, we will have to get to Supermex some day soon! Please tell Michael thank you for the good laugh and that I say hello.

      Love,
      Lisa

  2. Kellie March 11, 2012 at 9:45 AM #

    But now they will say Your Not In Treatment so You don’t need HELP, Girl You know how I feel about all THIS! They hang-up on Me when they call wanting Money I say Would YOU LIKE to Donate to ME? I have Never been treated so BAD by HUMAN-BEINGS!!!!
    But I’m sure if We were ALL PINK RIBBON HAPPY BREAST CANCER WOMEN……..NOT
    Susan Has Been Lost in the Whole Koman Business! YES, BUSINESS!!!!

    • cancerfree2b March 11, 2012 at 9:55 AM #

      Hi Kellie,

      By the way, just saw your message with photo!!!! Thank you, that was awesome. You are beautiful and you have such a great sense of humor!!!

      Thank you for your comment here. I know it is sort of old news – how Komen treats those of us they claim to be all about. But, it is only old news to you and me and others who have gone through this. That is why I write what I write because It is my hope that in doing so, more people will wake up and see what Komen has become.

      I believe that the person from Komen (who is just a kid, by the way – I looked her up on linked in and she looks to be in her twenties) probably believes she is working for this great organization and helping people. But, sadly, she is just one of their tools. I highly doubt that she even understands the Jonestown Koolaid reference. But, I don’t really care, I didn’t write this for her.

      The thing is, when I was in my twenties, if something like this came before me I would be working my butt off to get to the bottom of it (no pun intended) and trying to find a way to get this fixed – regardless of my position or job title. But, that is just me.

      Great to hear from you, my sweet friend from Arizona.

      I hope to see you sometime soon!

      Love,

      Lisa

  3. Danielle, The Glamorganic Goddess March 11, 2012 at 3:13 PM #

    I could not agree more! I also had a VERY similar experience with Komen (waaaay before all the Planned Parenthood Drama) and well as The American Cancer Society, etc. NOBODY could help me… with anything! I was diagnosed in 2009 at 31 and now I’m considered “Out of Treatment” because I decided against Tamoxifen. What a joke! Yet, I get letters, emails, phone calls on a regular basis asking ME for donations to help ‘Cure Cancer’. There isn’t much that infuriates me more than people profiting off of my suffering! I will also, as long as I live continue to make sure people are aware of this! They should be ashamed of themselves! Keep writing what you write girl! I can’t write about this stuff on my Blog-a-licious because it makes me crazy! I took sort of a different approach to trying to help other Cancer Survivors (+ those who want to prevent it)… I help them avoid Pink-washed + Green-washed Beauty Products + try to find Products with ingredients that will help their Health instead of harming it. Thanks for doing what you do!

    xo
    Danielle
    The GG 🙂

  4. Pink Ribbon Blues March 15, 2012 at 12:56 PM #

    Thank you for sharing this experience, Lisa. It’s so infuriating to know that an organization that claims to provide so much support for the diagnosed leaves so many people at the sidelines. I can’t tell you how many people have told me similar stories. 1-800-Go-KOMEN is really an accurate phone number. It’s all about cheering the organization on, not about the organization supporting you in the ways you need it most. It breaks my heart. So glad you are willing to speak out. – Gayle Sulik

    • cancerfree2b March 15, 2012 at 10:35 PM #

      Thank you Gayle. I really appreciate your comment. My experience was, and is not, unique. I have heard from countless women since first blogging about this. It is really sad.

      Thank you for your comment, I really appreciate it.

      And I LOVE, love, love your book – thank you for writing it!

      All the best,
      Lisa

  5. Jen May 25, 2013 at 10:00 AM #

    Lisa, I am astounded by your strength and wit. My favorite aunt was a breast cancer survivor (diagnosed in 87, and had a mastectomy in 88), and sadly died last summer from lung cancer. I’m infuriated by what I’ve heard here. My aunt donated constantly to SGK because she believed in what she thought the organization was trying to do.I was turned on to your blog by a very good friend of mine. I hope that you are doing well! I don’t want to “push” other charities, but my grandmother received financial assistance and a wig when she was going through chemo from the ACS..Of course, that was nearly 30 years ago.That is why I’ve normally ONLY donated to them. I’ve also given money to “Stand Up 2 Cancer”. Both of these organizations have untarnished reputations and will give help if one needs it. Anyways, I love your blog. It makes me laugh and cry simultaneously! LOL

    • cancerfree2b June 4, 2013 at 10:16 PM #

      Dear Jen,

      Thank you so much for your thoughtful comment. I have been offline for a while (at least off of my blog for a bit).

      I am so sorry for your loss. I am glad that ACS was so helpful to her. They are (in my opinion) a good organization and I feel that Stand Up To Cancer is also good. I definitely think that either are a thousand times better than Komen.

      I really appreciate your kind words. I am glad to have made you laugh (sorry for the tears though) 🙂

      Thank you again for your comment and kind words.

      All the best,

      Lisa

Trackbacks/Pingbacks

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