Komen: Please Leave Me Alone

31 Oct

Today I was yet again, hit up for money by the Susan G. Komen Foundation for the Cure. This is what they had to say: “take advantage of these last few hours to show that YOU care and want to a make difference in our community” and “let’s use these last few hours to save as many lives as possible”

Here is my response to them.

Dear Susan G. Komen Foundation for the Cure:

I am a breast cancer survivor.

I was diagnosed in March of 2009. My Aunt died of breast cancer in 1994. At the time of my Aunt’s diagnosis I was in law school and Nancy Brinker came and spoke to the women’s law association at my law school. She was there to promote her foundation in her sister’s honor and to urge us all to get mammograms at age 40 and to do self breast exams. At the time I met Ms. Brinker, I could not help but wonder why it was that my Aunt, who was at that time suffering through chemo (and doing so simply to extend her life long enough to see her first grandchild born) had never had any contact with the Susan G. Komen Foundation for THE CURE. I listened to Nancy speak about her sister and about her pledge to “end breast cancer forever”. And, like many, I believed that she meant well. But, no one from her foundation every helped my Aunt. Still, I thought, well, maybe they are so busy “racing for a cure” that they do not have time or resources to help a dying woman . . . my aunt, suffering through chemo, no cure could come in time for her . . . and, after all, that is what Nancy’s foundation was racing towards . . . a cure.

So my family cared for my Aunt until she died. Her children, her sisters, her husband, friends all showed up. But, nothing from the Komen Foundation. But, then, that wasn’t their job, was it? No, they were busy racing for a cure.

So, after my Aunt succumbed to breast cancer (after she spent her last days unable to handle medical costs or afford basic comforts) I ran in Susan G. Komen’s Orange County Race for the Cure in her honor. I truly believed that my doing so would somehow make a difference. After all, Nancy’s goal was to “end breast cancer forever” and I was certainly behind that.

Fast forward to March of 2009 and through a routine mammogram I was diagnosed with an aggressive form of breast cancer.

I again showed up to your Orange County Race for the Cure. I was going through treatment, going through surgeries, battling infections, battling my insurance company, trying to survive without an income . . . I sought help from your organization. I sought help from you because you claimed – on your very own website – to provide financial assistance to women going through treatment. I desperately needed your help.

I called day after day after day the number that was provided on your website to apply for financial assistance. I called multiple times a day over a period of months. Each time I called there was an outgoing message saying that “no one was available at this time, please call back later”. There was NO way to leave a message. I searched your website repeatedly looking for an email address or some way of contacting the person who handles the financial assistance that your organization claimed to provide. There was nothing, no email, no point of contact, no way to leave a voice mail message. Instead, just a teaser (and a bragging statement about how you help women with the costs of their treatment).

I finally called the Orange County chapter. I explained that the New York Chapter that is the ONLY chapter that apparently has the authority to provide financial assistance to women going through treatment, did not ever answer their phone. I was transferred (after multiple calls and complaints to the OC Chapter) finally, to the director of the Orange County Chapter. I explained to her that I had not been able to reach anyone for months, that no one answers the phone in New York, that there is no way to leave a voice mail message. The OC Director immediately said, and I quote: “Yes, I know, they don’t answer their phone. Have you tried calling the Salvation Army? They can help you with your utility bills. Have you tried calling the American Cancer Society? They can help you get information on clinical trials. Have you called the Lance Armstrong Foundation? They can help you get emotional support and match you up with a survivor who has had the same kind of cancer as you.”

I was so dismayed, disappointed, crushed, heartbroken, devastated.

Meanwhile, I was undergoing Herceptin treatments and radiation and recovering from surgeries. I was unable to work. I was broke. I was lead to believe – through Komen’s own web page – that if I was in financial need that some of the nearly 400 million dollars that was raised that year could be used to help me while I was in need.

I am not one to be looking for handouts. I raised money for Komen. I have raised money for other cancer organizations. I was under the mistaken belief (as was everyone I know, all of my friends) that Komen actually helped out women who were in my position.

Not true. At least, not in my experience. And, clearly, from the OC director’s response, it is typical that no one answers the phone in the New York office – THE chapter charged with the responsibility of helping cancer patients with their treatment costs, and financial assistance. No other chapter at that time had the ability to provide financial assistance. All requests had to go through their chapter. I am certain that I made over 100 calls to that chapter – calling the number that was listed on your site for financial assistance. After the 30th call or so, it simply became a game, a “let’s see how many times I can call and not get a live person and not be able to leave a message” game. It was unbelievable.

I have shared this story with many . . . many who in the past donated to your organization who now will no longer donate to your organization because like me, they feel your organization is a fraud.

I was mislead. My family and friends were urged to donate to your organization believing that you would donate most of their donation towards either research or paying for someone’s treatment. Neither of those are true.

You say you want to “end breast cancer forever” yet, you spend about 19% of the money that you TAKE from good hearted people towards research.

We are all very aware of breast cancer. If you still think creating awareness is a necessary goal, then make it clear that the money you raise is going to awareness. But, instead, you trademark the language “for the cure”. Instead, you state that your mission is to “end breast cancer forever”. How can that be when you only spend 19% on actual research.

How can you claim to be helping women with breast cancer when the phone number that you dangled out there on your website to call for financial assistance has no one, EVER, at the other end.

I have found out through my own personal experience how little you actually do towards racing “for a cure”. My cure, if I have one at all is in spite of you. My survival, if I survive, is in spite of you. My ability to survive financially, to navigate the difficult insurance and medical bill waters, is in spite of you.

I will spend every last day of my life (however long that will be – by the way, I expect it to survive a very long time) making everyone I know aware of what you have not done. I want to believe that your organization stemmed from a desire to make positive change, to help those in need and to work towards a cure for breast cancer. But, my experience – up close and personal – has told a different story. I have received no help from your organization. When I have actually spoken to a live person at Komen, they have referred me back to the American Cancer Society, to the Salvation Army, to social workers that my hospital “might have on staff who could help me find financial resources”.

So, while I expect nothing from you, I do have this one request: STOP, please STOP asking me to donate money to you. Please stop asking me, a breast cancer patient who you ignored, who you mislead, for money. Stop asking me to buy your nearly hundred dollar bracelet every year. Stop asking me to purchase your toxic chemical containing perfume. PLEASE, please, please, just leave me alone.

60 Responses to “Komen: Please Leave Me Alone”

  1. AnneMarie October 31, 2011 at 4:34 PM #

    WELL done! I do hope someone reads this and we can get something to change. Advocacy and research are the only areas where I will spend any donor dollars. I’m done. So Done. Great letter!
    AnneMarie

    • cancerfree2b November 1, 2011 at 12:15 AM #

      Hello AnneMarie,

      Thank you for your comment. I appreciate it. I am done too.

      I agree with you, advocacy and research are so key. I also feel that organizations out there that really help cancer patients in their time of need are so worthy too. The Beckstrand Foundation is a great source of financial assistance to cancer patients. And, I was fortunate enough to be able to attend an amazing retreat through another incredibly deserving non-profit called AWOL (A way of life after cancer) Crysalis to Wings. They support women with all types of cancer and provide them with emotional support and an incredible weekend retreat experience that for me was life changing. They made a real difference in my life post cancer.

      I am going to post something about AWOL on my blog tomorrow. They are having a fundraiser soon and I hope that people will support this wonderful organization. It is all volunteer run . . . no one takes a pay check, every dollar raised goes towards helping a cancer patient. That is so worthwhile and so important.

      Thank you again for your comment.

      And I am so glad we are done with October!

      All the best,

      Lisa

  2. Jamie Inman October 31, 2011 at 7:32 PM #

    This is a travesty. Thank you for sharing your struggle with us. Your courage and perseverance are as inspiring as Komen’s greed and indifference are disgusting. I hope you have found sources support and aid in other places.
    Jamie Inman
    2time breast cancer survivor

    • cancerfree2b November 1, 2011 at 12:00 AM #

      Jamie, thank you for your comments. I appreciate it. I have lost friends over my views regarding Komen . . . so I appreciate your support.

      It is not popular here in Orange County to criticize Komen. They are huge here. But, I am fed up. I am truly tired of the nerve of them to continually ask me for money. i am still broke from cancer. I am alive and damn grateful to be here. But, I am still struggling with the fallout that cancer visits upon a person. It is what it is. I am happy and glad to still be here and glad to be recovering and getting better all of the time.

      But, it chaps my hide to no end that Komen lead me (and I am sure countless others) to believe that they would help, wasted my time and to this day still thinks it appropriate to hit me up for money.

      The worst of all of this is that we need money for research. I have a niece who is 19, I don’t want her to have to face this disease. I have friends who have stage IV breast cancer . . . how many dollars go to researching a cure for that? Very few. It is shameful.

      I take no issue with an organization raising money for breast cancer education, prevention, early detection, etc. But, Komen claims to be racing for a cure, they lead us all to believe that the money they collect is in the name of a cure, in the name of research. That is was is so disgusting.

      I want them to do better.

      I hope that they will do better.

      I am so happy to hear you survived breast cancer twice (very sorry you had to endure it twice). But, that you beat it twice is very encouraging. I am told I have a very high risk of recurrence. But, I try not to think about it and hope, of course, to be around a long time. And, I will keep writing about Komen until they do better by all of us.

      Thank you for your comments.

      All the best to you.

      Lisa

  3. Bonnie October 31, 2011 at 8:28 PM #

    Its about time! Thank you, where exactly does all that $ go that the Komen foundation gets? It is a disgrace and it takes away from other foundations who provide funds for
    research and offer real help to cancer patients and their families.
    One of the first things I said to my daughter when I got breast cancer was, “don’t worry we don’t have to run in those races, wear pink, and give our money, time, and effort away.”
    I felt the focus had to be on quality medical care, and to be with my family….I throw those requests away also….what exactly have they improved for patients and where is the research? I think it is just a lot of people patting each other on the back and giving awards and organizing fund raising events….no thanks…..

    • cancerfree2b November 1, 2011 at 12:10 AM #

      Hello Bonnie,

      Thank you for your comments. I really appreciate it. I hope you are doing well.

      Komen spends a lot of money on a lot of things. There own financials indicate where the money goes. In my opinion, way too little goes towards research – that is where a cure lies.

      Before my own personal experience with breast cancer, I just presumed that Komen helped women who needed help during treatment and I just presumed that a majority of the millions raised went towards research for a cure. I was lead to believe this was the case through Komen’s own advertising. I believed them, but, I was mislead.

      I have attended their races for the cure and every time they parade survivors up on their stage and seemingly take credit for their survival. They paint a pretty pink picture of health, recovery and hope. I see the point of this portrait as it lead to hope for those who are going through treatment. But, if one did not know better – did not have to experience cancer personally – then you would leave one of these events thinking that there is no ugly side of cancer, that Komen was the reason these now healthy women have survived. No, treatment (chemo drugs, radiation, Herceptin, etc.) are why these women survived (oh, and some luck too). And that treatment came from RESEARCH. Komen has supplied support for some of that research. But, they are not doing enough. Not in my opinion.

      The races really rub me the wrong way. You were right to stay away.

      I hope you are doing well.

      All the best,

      Lisa

  4. A friend November 1, 2011 at 4:59 AM #

    Thank you for sharing. When my dad passed away from liver cancer I contacted the American Cancer Society in which everyone donates and all my family and I could get from them were brochures on what type of cancer he had. Seriously, liver cancer is liver cancer. No help in any way – so your message, unfortunately, is not surprising to me. Is Koman a publicly traded company? if so, we should be able to see how they spend their money. If not, maybe it’s time to contact our State Reps and demand some explanation. I do not have an issue with collecting monies to find a cure, but when you promise to help out families financially and do not, then this crosses the line. I think they need to be strongly reprimanded and show their truth. I wish you luck in your cure and know you will be strong going thru this….you’ve shown great strength already.

    • cancerfree2b November 1, 2011 at 11:13 AM #

      Dear Friend,

      I am deeply sorry for your loss and I am very sad that there was not the type of help that your father and family needed. There are good organizations, The Beckstrand Foundation is one of them and another is Crysalis to Wings (they are a non-profit that helps cancer patients through a program called AWOL: A Way of Life After Cancer. Both of these non-profits help cancer patients.

      Thank you for your comments, I really appreciate it. It is difficult to share this story and so I really appreciate the supportive comments.

      Komen’s financials are available online. That is how we know that on average they only spend somewhere between 18 and 20 percent on research. Of that, very little goes to research for metastatic breast cancer – the kind that kills. I am not sure if any of it goes towards metastatic breast cancer.

      I will keep writing. I hope that others will do the same. I also hope that many will share my post because I think it is important that this story, this side of Komen is out there. Maybe, just maybe with some public exposure and pressure Komen will do better by us all. And then, maybe other organizations will do the same.

      Thank you again for your comments.

      All the best to you and yours,

      Lisa

  5. Jody Schoger November 1, 2011 at 6:35 AM #

    What a testimony. What a story. Unreal, horrific, and enraging. This needed to be said.

    Thanks for an incredible post,
    Jody

    • cancerfree2b November 1, 2011 at 11:23 AM #

      Jody,

      Thank you so much for your support. It was very, very hard for me to put my experience with Komen into words. At the time this happened I was very ill and I could not even find a way to express it.

      I just got blood work last week and saw, in black and white, that my body has long forgotten that I went through chemo and radiation (at least that is how I am interpreting the results) . . . all of my counts are in normal range, everything is perfect except for my kidneys. Still, that will get better too. So, my kidneys can still remember I guess 🙂

      My point is that now I feel strong enough to take a stand. I feel strong enough to stand up and yell this from the mountain tops.

      Sadly, I have lost friends here in Orange County because of my criticism of Komen. That is painful to me. But, it is what it is. I hope that I can be a part of a needed change. And, I am grateful for your support. I really had difficulty writing this and hitting the “publish” button . . . I knew it might make me a target, that it might offend some people and that I would feel exposed . . . that time in my life, how Komen treated me, was very painful and writing about it now (publicly) is a bit scary. But, I hit send and I will keep writing until Komen does better by us all.

      Thank you, thank you, thank you.

      All the best,

      Lisa

  6. nancyspoint November 1, 2011 at 7:00 AM #

    Lisa, This is so upsetting. It’s really important that you have shared your story. Good for you! I’ll pass it along.

    People are starting to wake up, at least I sure hope they are.

    • cancerfree2b November 1, 2011 at 11:33 AM #

      Hello Nancy,

      Thank you so much for your kind words. I really appreciate your passing this along. It was very hard for me to write this and to share it publicly. I intend on reading this on camera and putting it up on youtube. I want to next put a face behind my story. I can’t read it without crying. So, I have to work on that. I need some time. But, soon, I hope to read it on camera and put it up. I am so grateful that breast cancer awareness month is over and I can once again go into a grocery store or an office supply store or where ever and not feel under a pink attack. That being said, I have just gotten started. So much money is raised year after year by Komen and where has it gone. Nancy Brinker was in China this past week . . . for what? Who paid for her trip? How is traveling to China going to give us a cure? Is she bringing research scientists from all over the world into one room to discuss it? I can’t imagine that this is what her sister expected her to be doing – pushing toxic chemical containing perfume for nearly sixty bucks and only spending a $1.31 of it on research.

      I went to see a friend of mine during her last chemo round a few days ago. I remember how good it felt to be done with that. On my way out of the treatment facility I saw a basket of pink bracelets (plastic/rubber type – just like the Lance Armstrong bracelets, only pink). They were sold for $2.00 and 100 percent of that $2.00 goes directly to research. The bracelet read: Without Research There Is No CURE.

      That is so true. So someone is able to sell a bracelet for two dollars and give all of it to research and Komen sells a bad perfume for $59.00 and less than 2 bucks goes to research.

      What a waste. Think of how much could be done with $59.00 going to research instead of the $1.31.

      Okay, I have to stop ranting and get to some non breast cancer advocacy work (the kind that pays my bills work) 🙂

      Thank you for your support, this was a hard one to put out there.

      XOXOXO

      Lisa

  7. Tami Boehmer November 1, 2011 at 7:27 AM #

    Wonderful post, Alicia! Thanks for shedding light on this issue. I know they have funded some great things like Image Reborn, a free retreat for breast cancer survivors . It was so dysfunctional and the director was so inept, I had to quit. There seems to be no oversight over what happens on the local level, and national as well.

    I only hope that the negative publicity they are receiving lately will perhaps make them question and change their practices. There is so much good that can be done with the large amount of money they raise.

  8. Tami Boehmer November 1, 2011 at 7:29 AM #

    Oops, I accidentally left off I sentence. I worked for Komen for seven months. That was what I was referring to, not Image Reborn. I have not walked in a Komen race for years since that experience.

    • cancerfree2b November 1, 2011 at 11:38 AM #

      Hi Tami,

      Thank you for your reply. I have often wondered what it would be like from the inside. I have friends that have worked at Komen over the years (some on the payroll and many as volunteers). Those that have been employees have echoed your same sentiments. Clearly Komen has done some good things, I do not dispute that. But, as you say it is dysfunctional. I believe that. Everything that I see tells me it is dysfunctional.

      Thank you for sharing YOUR experience and thank you for your comments.

      This was very hard for me to write about and to make public. But, it is my story and I really do believe it needs to be heard. I want to believe that Komen can and will do better. But, I wonder if the huge machine they have become will even allow that.

      All the best to you,

      Lisa

  9. AnneMarie November 1, 2011 at 11:53 AM #

    Hiya again Lisa…
    Just wanted to make sure I let you know one thing… when I use the word advocacy, I mean “help those who need help” ….. Research for those who need us to stop their disease…. and then, yes absolutely prevention so no one has to slash/burn/poison. I still am stunned at the whole NY phone call thing. I’ve read your letter several times….. and each time, I get more annoyed. I ***may*** have a chance to meet with someone face to face and it would be someone pretty high up on the food chain in the NY area. I want to lay low with that (so putting it in a blog post is a great way of “laying low” lol ) …. Someone I know raised a TON for the NY race. She may be having dinner with the NY CEO. I haven’t seen this friend in years but she asked me if I would like to join them. Won’t happen for at least a month but maybe a face to face with a REAL face with an Army behind me.. and we can begin to make a dent? I’m a skeptical NY’er but willing to try anything….

    AnneMarie

    • cancerfree2b November 1, 2011 at 12:49 PM #

      Dear AnneMarie,

      I would hitch hike to NY if it meant I could join in on that dinner meeting.

      I so appreciate your support. And, I agree with everything you have said. I spent some time in NY in 1999 working at a law firm in Manhattan, loved being there, loved the NY straight forwardness in the work setting and appreciated the no bs way of dealing with things (at least that is how I saw it). Maybe this person would have a different take on all of this . . . out here in California it is pink balloons and galas and I am sick of it.

      Keep me posted and please do not hesitate to contact me privately. I can be reached via email and would be happy to give you my contact information that way. I am with you. And we do need an army, we need to all stand up for change.

      I know that there are people within Komen who are there to do good, who are passionate about a cure, about helping others. But, I feel that the Pink Machine has grown so large it is out of control. Did you see Tami Boehmer’s comments above (she used to work for Komen).

      Something has to be done. I am here and hopefully will be for a very long time. I am hopeful that some positive change can occur. I know that it will only happen through advocacy, all of our voices being heard, all of us speaking up.

      It is time for a revolution. It is time for a cure.

      All the best, always,
      Lisa

  10. beanbun November 1, 2011 at 12:51 PM #

    I am really disgusted with the way you were treated, but I am not surprised. It seems like so many organizations are so corrupt these days. My sister recently went through a breast cancer scare and is thankfully cancer free.

    I run my own small business making bags and clothing, please let me know if any organizations you work with would like items for raffles. I would be happy to donate them for free so you can use the entire amount to help people.

    • cancerfree2b November 1, 2011 at 1:15 PM #

      Oh that is awesome! Thank you! I do know of a very deserving organization. They are having a fundraiser on November 13th. They will have another fundraiser next year. They are called: AWOL, A Way Of Life After Cancer. They helped me and have helped so many. We had an opportunity to host a fundraiser (a friend donated a beautiful space for it) and a comedienne is performing and my band is also performing. It will be a brunch on November 13th. Unfortunately, we do not have many tickets sold. Because so many have donated (the space, the entertainment) most of the ticket price (which is $50 a person) will go towards helping cancer patients. No one at AWOL takes a salary, they all donate their time. So their overhead is extremely low.

      I believe the only cost associated with this upcoming event is the food. The caterer is doing the event at cost. The hope was to have 100 people attend. But, so far, it looks like there are fewer than 30. Very sad. It is just so hard to get money in during these hard economic times.

      Anyway, a donation to them would be wonderful, and greatly appreciated. They auction off items at these events, so I know that they would be grateful for a donation.

      I will post their information (website, and the invitation to their upcoming event) on my blog and on facebook. I am hoping that we can get more attendees. It would be so great.

      Thank you for your offer, that is so wonderful.

      All the best to you,

      Lisa

      • beanbun November 1, 2011 at 10:41 PM #

        I would be happy to! I’ll look and see what I have that I can donate, or maybe I can do a gift certificate if I have no appropriate items on hand. And I’ll help promote!

    • cancerfree2b November 2, 2011 at 7:04 AM #

      Thank you! That is so wonderful! Right now they need to sell tickets badly . . . the event is on November 13th and the last day to purchase tickets for the event is on November 3rd (I am going to try to see if that can be extended, but, for now that is the deadline).

      So many have donated for this fundraiser – the event space, music (my band :)), the caterer doing everything at cost, a comedienne. So almost all of the ticket price will be money for the foundation – which in this case (unlike Komen) goes directly to support women with cancer.

      We had hoped to have a 100 or more attend. But, as of last week we only had 20 tickets sold. It is really sad. I am going to approach some companies (although there is very little time now) in the hopes that I can get a company to purchase a table of tickets or something. Even if they can not physically attend – the tickets could be used to sponsor AWOL clients who I am sure would enjoy attending the event.

      I wish there were more time. But, hopefully someone will come through.

      By the way, I could not reply to your last reply – something about WordPress doesn’t allow it, so I replied again to your original comment (so I hope you are getting this message).

      Thank you so much for your offer. If you know of anyone who might be willing to purchase a ticket or tickets at this late date, please encourage them to do so. It will really help so many.

      Oh, and WOW, I looked at your website – beautiful work! Very impressive! 🙂

      All the best,

      Lisa

  11. DeAnn November 1, 2011 at 7:48 PM #

    A friend of mine shared your blog posting on her Facebook page, and I am so in agreement with you! I realized the true face of this organization last year when KFC came out with “Buckets for the Cure”. If you bought a bucket of Fried Chicken from KFC with the big pink ribbon on it, they’d make a donation to Susan G Komen. So somehow, buying a cheap industrial food that nobody with cancer should eat, and you probably shouldn’t eat if you don’t ever want to get cancer, is supposed to help find a cure for cancer? Yeah. I don’t think so. Thanks for the courage to write this!

    • cancerfree2b November 2, 2011 at 7:15 AM #

      Hello DeAnn,

      Please tell your friend thank you from me for sharing my letter on her facebook page. It was very difficult for me to write this and even more difficult to hit the “publish” button. But, I am glad that I did. I want so desperately for the right thing to be done here . . . Komen needs to put their money where there mouth is.

      The KFC buckets “for the cure” last year really got me too. I eat so carefully post cancer and took great caution regarding my diet during treatment (which by the way was very expensive to do, especially for someone who could not work because of cancer). But, I know diet is so important. So, yeah, I am so with you on the buckets for a cure garbage. So disgusting.

      Please share letter with anyone you can. I want to make change and fast. I want Komen to do better.

      Incidentally, this week Nancy Brinker was in Beijing. I do not understand how this trip, on behalf of Komen, will help end breast cancer forever. Maybe it was part of her “awareness” campaign. I don’t know. But, I find it really disgusting that she is galavanting around the world, attending galas, and having the red carpet rolled out for her everywhere she goes while the rest of us wait for her to live up to her pledge of “racing for a cure”. 19 percent is way too slow.

      All the best to you. Thank you for your comment and please do share my letter. With awareness maybe, just maybe Komen will step up and do the right thing.

      Thank you again,

      Lisa

  12. Joan Oliver Emmer November 2, 2011 at 5:27 AM #

    Your letter made me cry.

    • cancerfree2b November 2, 2011 at 7:21 AM #

      Joan,

      I am sorry.

      I cry when I read it too. It was such a difficult time. I am so much better now physically, but, I still have tremendous financial stress from the costs of cancer and form the time that I was unable to work. My story is no different than that of many cancer patients. I have insurance. But, keeping your insurance, keeping your residence and eating are all very difficult to manage during and post cancer.

      I am sorry I made you cry. But, I appreciate that you were moved. I hope that you will share this letter as I really want to shed light on what happened to me (or should I say, what did not happen) so that maybe Komen will step up . . . and if not Komen, then perhaps other organizations and individuals will realize that they need to step up to help since the big pink machine is not. Before I was diagnosed I truly believed that Komen helped women in financial need. They said they did and I believed them.

      That travesty here is that because Komen claims to help – others do not help. So Komen is really harming us.

      All the best to you,

      Lisa

  13. Stacey November 2, 2011 at 7:32 AM #

    Lisa, this is unbelievable. Thank you for coming forward. If Komen can’t (or won’t) help someone that is the exact person they claim to be working for, what are they doing? My problem with them is their consistant banter about “awareness.” It’s possible to still spend millions on education and community programs while still allocating the bulk to research. At least, it seems that way to me, but now, after reading your story…I hold even less faith in their mission. They have to stop putting their own needs first and remember who they’ve set out to help. Thank you for sharing. I’m sorry your tough time was made worse by their lack of assistance.

    • cancerfree2b November 2, 2011 at 8:20 AM #

      HI Stacey,

      Thank you for your support. I really appreciate it. I so agree with you . . . millions can be spent on education and community programs while still allocating the bulk to research . . . you are so right on.

      I hope that more will see what is wrong about Komen. This past week Nancy Brinker was on a trip to Beijing . . . huh? I asked her directly (via twitter) who paid for her trip. I did not get an answer and I did not expect one. But, I find this all so disgusting. If her sister were alive today and going through chemo would Nancy think it was okay to run off (with presumably fundraised monies) to Beijing? How is what she is doing now any different? She represents all who are going through this disease. She claims to fund us, to support us, to help us fight . . . but, I don’t see how her traveling the world is helping me or anyone else.

      Thank you for your comments and support.

      All the best,

      Lisa

  14. Lesley November 2, 2011 at 8:45 AM #

    This is fantastic. I’m so angry for you. I didn’t realize they even claimed to help people. What a crock. Thank you for sharing this, it is important.

    • cancerfree2b November 2, 2011 at 11:02 AM #

      Thank you Lesley.

      🙂

      All the best,

      Lisa

  15. Diana (@heartofknzus) November 2, 2011 at 9:06 AM #

    Amen! That’s all.

    • cancerfree2b November 2, 2011 at 11:03 AM #

      Thank you!

      🙂

      This was hard to put out there. Your support helps so much.

      All the best,

      Lisa

  16. Rachel Riddell November 2, 2011 at 11:35 AM #

    Bravo!! More people need to be aware of this. I have been saying this for years. Fraud, fraud, fraud. A joke of a foundation that feeds on the emotional purchasing power of pink products and theatrical races.

    • cancerfree2b November 2, 2011 at 11:38 AM #

      Rachel,

      I agree. And thank you for speaking out. We all need to stand up. I applaud you for seeing the light years ago!

      All the best,

      Lisa

  17. kdhoffman2 November 2, 2011 at 5:28 PM #

    This is such a great article and I’m going to share and retweet it as much as possible. I would love to put it on my blog too–with a link here just to get more people. I wrote an Open Letter to Nancy Brinker on my blog on http://healthychange4you.blogspot.com (which I’ve just migrated to http://kdhhealthcomm.wordpress.com. Please know you are not alone.

    • cancerfree2b November 2, 2011 at 5:35 PM #

      Thank you KD! I appreciate the repost and you are more than welcome to post this on your blog as well, either as a link or a guest post if you prefer, I would be happy to do that.

      I look forward to reading your letter to Nancy Brinker and with your permission, I will happily share it as well!

      This is the only way there is any possibility of their changing . . . by exposure and pressure.

      Thank you for your kind words and support!

      All the best,

      Lisa

      • kdhoffman2 November 3, 2011 at 10:04 AM #

        Would love it as a guest post. Have just sent you an invitation to be a contributor. Thank you so much.

  18. Patti November 2, 2011 at 5:36 PM #

    Very well said. I, too, shall share on my FB page, as I believe everyone needs to know this! I’m also a 2-yr. survivor (without traditional treatment, no less!) who hopes you continue to make a full recovery.

    I always wondered about Komen and where all the monies go. And when KFC became a pink product, well, I completely lost all respect for them. Two BC groups I do find worth supporting are Breast Cancer Action and the National Breast Cancer Coalition, whose goal is a cure by 2020.

    Keep up the good fight, Lisa!

    • cancerfree2b November 3, 2011 at 9:18 AM #

      Patti,

      Thank you for our comments and support.

      I am glad to hear you are a survivor too.

      I am a huge fan of Breast Cancer Action. They have done so much and are so needed. And the Breast Cancer Coalition, their goal is great!

      Thank you for your support and for spreading the word! I really appreciate it!

      All the best in health,

      Lisa

  19. Pink Ribbon Blues November 19, 2011 at 9:00 AM #

    I am so behind in my blog reading…and I wish I’d read this sooner. I can’t tell you how many women who have told me that they sought assistance from Komen and didn’t get it. Just as you said, the bragging statements about helping women with the costs of their treatment doesn’t match the budget allocation. There is a lot of PR spin and a lot of false promises. How will this organization be held accountable for truth in advertising? By people like you who share their experience. Thank you doing so. – Gayle Sulik

    • cancerfree2b November 29, 2011 at 11:37 AM #

      Hello Gayle!

      Thank you so much for your support! I apologize, but, I am only just now seeing your comment here! So, sorry. I too have been behind in blog reading and pretty much with everything in general. But, today I decided I needed to come back to my own blog and say SOMETHING 🙂

      I struggle here sometimes, writing. I get such a mix of emotions when I write . . . especially about Komen and all of their crap (because, let’s face it, it is crap) . . . that sometimes I simply need a break from it.

      But, today is my birthday. Something that as Jen, above said, Komen has nothing to do with my having . . . another birthday. If anything, their false hope and false promises and constant push to get money from me while I was going through chemo no less . . . made me depressed and contributed to my not being in the right frame of mind to cope with the disease. So, for me, my survival is definitely in spite of them.

      Thank you so much for your comment and support. It means a lot. It truly is not an easy thing to relive or to express. But, I know it is important to take them on, for all of us to hold them accountable. And, I know that a voice of a cancer patient may echo louder with some simply because I can say that they (Komen) did NOT do anything for me other than cause harm to me. Truly that is how I feel. It was harmful to be mislead, to have my precious time wasted . . . during treatment I had such limited energy to do anything and the fact that they lead me to believe that spending my energy and time on them would lead to my getting help (help that they dangled in front of me, help they claim they give and a result they get money from good intentioned people) was wrong. They have no right to do that to me or to anyone else. They did it to my family too . . . the false promises and expectations that Komen fueled. It was simply harmful and hurtful to all of us.

      Well, you know me by now . . . I get started and then I can’t quit . . . 🙂

      I really just meant to thank you! 🙂

      So . . . thank you.

      All the best,
      Lisa

  20. jen November 19, 2011 at 9:13 AM #

    Thank you for writing this. I was diagnosed with bc last year and within a month, Komen stepped up their letter writing campaign with me. It took THREE phone calls from my husband to get them off my back AFTER I had written to them.

    Did they drive me to the hospital, pay the bills we are STILL paying or watch my kids for me? No. Do they care about anything except getting money from me? NO! Also, look at the companies they partner with…we don’t NEED those items nor are they necessarily good for us!

    Personally, I am not a fan of the term survivor and don’t use it to describe myself (I feel that term should be used by choice). It is another thing about Komen, how they can lump everyone together, yet we are really all just individuals who had a very bad year (or two, or three). I have worked very hard to get my life back to my pre-BC normal and very proud to say that Komen had nothing to do with that (nor will they ever).

    Thank you for a well-written letter and I am so sorry for what you have been through!

    ~Jen

    • cancerfree2b November 29, 2011 at 11:43 AM #

      Dear Jen,

      Thank you for your comment. I apologize for the delay in responding. I took a break for a bit from my blog and I am only seeing your comment for the first time today.

      I am with you . . . I don’t like to use the term “survivor” . . . that is just my personal choice.

      I love what you said: “Did they drive me to the hospital, pay the bills we are STILL paying or watch my kids for me?” Nope, they do nothing tangible that I can see for cancer patients. I know that some money goes to research. Okay, I get that. But, what about the lion’s share? That doesn’t go to research and that doesn’t go to helping cancer patients.

      I could not believe how nervy they were in asking me for money when I was going through cnemo and could not work . . . but, I have learned since that time that that nervy-ness is just the tip of the iceberg with them.

      It sounds like you are doing well? I hope so.

      I too am doing my best to get back to my pre-BC normal. And, Komen has had nothing to do with my recovery or progress.

      Thank you again for your comment. I appreciate your support and kind words.

      All the best to you!

      lisa

  21. Danielle, The Glamorganic Goddess March 11, 2012 at 3:02 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! 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!

    xo
    Danielle
    The GG 🙂

  22. nickqwells April 26, 2012 at 8:18 AM #

    Shame on you, Susan G Komen is a great organization. I could understand them not giving co-pay relieve through partnered organizations (the only form of financial relief they have) to a Law Professor, that apparently didn’t qualify, when there are more financially troubled people with cancer. 82.5% of the money they earned went to programs. Only 7.6% went to administrative costs. It is sad that you had cancer, but it is even sadder that you are throwing fit that they didn’t directly give you financial resources to help pay your bills.

    • cancerfree2b April 30, 2012 at 10:30 PM #

      Hello Nick,

      Nice of you to comment on my blog about something you nothing of . . . my financial difficulties during a cancer diagnosis. You are a jerk. How dare you tell me “shame on you” for daring to critique the Susan G. Komen Foundation. I have written the truth about how they mistreated me and my story is NOT unique.

      They are not who you think they are. I know first hand what they are like, as well as what they are NOT about (and they are most definitely NOT about a cure). And as for your claiming to know how I was employed – or that I was even employed at the time I was going though chemo – SHAME ON YOU – you really are a piece of work. You do not know me. But, if you’ve read my blog you will know that I never had an opportunity to apply for the financial assistance that Komen brags about providing because they NEVER answered their phone calls – I called over 100 times and NEVER, not once, did anyone answer. And by the way, not that it is any of your business – I wasn’t physically able to work due to multiple surgeries, months of chemo, radiation and over a year of cancer treatment and complications. But, none of that matters to Komen – they dangle out a phone number to call for financial assistance and yet no one answers it. It is a scam. How dare you claim to know my situation when I was going through treatment. Shame on you for your arrogance.

      I highly doubt you will post my comment – especially since you don’t actually blog yet (although I do like your catchy blog name: “Nicholas Well’s World”. Welcome to my world, Nick. It is a parallel universe to yours – it is called REALITY. Why don’t you do a little research (like the rest of us have) and wake up! I don’t really care whether you post this comment – I just care that you read it. I am going to share your comment with everyone I know in the cancer blogosphere – those of us who have been onto Komen for some time – and you will likely be hearing from them too.

      Have a nice day.

      • nickqwells May 1, 2012 at 7:48 AM #

        Reality? Oh, the reality where you are the only person to have had cancer? The reality, where there is no way that a person criticizing your blog has an idea of what cancer could be like, because your the only person to have survived it, even though he has experienced it first hand? The reality of lambasting others because they didn’t help you? The reality that they didn’t answer the phone which must of been out of spite towards cancer patients.

        It is sad that you denounce such a great organization when they have helped others but failed to help you. That kind of logic is like saying a vaccination is terrible because 1 out of 10000 people die from a vaccine that saves you from a virus that kills 1-100 people.

        I am curious too, did you get a hold of them, because you say you never got a hold of them and then later on in your letter to them you say they did eventually talk to you and redirected you to organizations that could possibly give you financial support (Which is what they state on their website). How about being grateful to being alive and understanding that you still have nice clothes, a computer, a car, a roof over your head, and a job even though Susan G. Kommen didn’t help you… wait you really must have needed their financial support. Stop thinking the world owes you.

  23. Jenn October 9, 2012 at 8:18 PM #

    Truly sorry that you had an awful experience with NY Komen. That never should have happened – and wouldn’t happen at many other affiliates. I am confused though. Do you want the money to go to patient assistance or to research? Yes Komen ONLY gives 20-25% to research because the other 75% is granted out to the local communities. And Komen gives more to breast cancer research than any other group outside of the government. As for not getting finanicial assistance to help you that depends on the grants in the area. If no one applies for a grant to do this then what is Komen supposed to do? I agree “For the Cure” is misleading but who knew 25 years ago how complex breast cancer was. We all hoped for a quick and easy cure – now we know with science that it will take more. As for the emails from Komen – I suggest you use the unsubscribe button at the bottom of the email and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on…

    • cancerfree2b October 30, 2012 at 10:21 AM #

      Hello Jen,
      I think you are the one that doesn’t know what you are talking about. First of all, Komen does NOT give “20-25% to research”. Your numbers are wrong. To answer your question: “Do you want the money to go to patient assistance or to research?” here is my answer: I want Komen to stop being a fraud. I want Komen to stop claiming to be “for a cure” when they are not – no organization that puts more than 80% of raised funds to things OTHER than research can claim that they are “for a cure” for cancer. That just doesn’t add up. I want Komen to stop misleading all of us. And, most of all, I want Komen to stop claiming that they help patients with their treatment costs when in fact you can’t ever get anyone to call them back – ever.

      You need to read more carefully – Komen’s marketing people are emailing me directly – they use the email contact through this blog to contact me. It is not the email list that bothers me – you can unsubscribe from that once you find out that all Komen wants is your money. The emails from Komen that I am referring to are the ones that they send to me directly through this blog – from their PR and Media people trying to get me to stop telling the truth about Komen. That is despicable. They never answered a single phone call, never returned answered or returned any calls when I called their patient support line over 100 times – but when I complain about that publicly and call Komen out for who they are – I get email after email from their PR and Media people. Just a little disingenuous don’t you think?

      You don’t know what you are talking about. I haven’t found a single chapter of Komen that has anyone that will take your call or return your call from “patient assistance” – if you ask me – it simply does not exist.

      Anyway, the NFL and others have figured out that Komen is NOT worthy of support. Haven’t you noticed that with many large organizations Komen has been replaced (the NFL supports The American Cancer Society now – they dumped Komen this year). Many other organizations have followed suit. Now when I see a pink ribbon on a cup at Panera Bread I smile because I know that the money is going to something worthwhile – Dr. Susan Love’s Army of Women.

      I am thrilled to see that Komen’s stronghold is over. I was one of several people that asked for Nancy Brinker to step down. I know she is still there – but she has been rightfully shamed.

      I am glad that you agree that “For the cure” is misleading. Komen is misleading and they only respond when their is huge public outcry. It used to be when I criticized Komen that people would take offense (I am in Orange County where Komen boasts one of its largest chapters) but, now times have changed. Most people I talk to now are on to Komen. No one likes it when they hear that according to Reuters only 14% of the money Komen raised went to research. In fact it is making people pretty angry. It is nice to see that the climate here in Orange County has changed. It is making room for organizations that really do help people get funds. Komen is losing ground and I would like to think that I have been a part of that awareness – making friends and family and blog readers aware of what Komen is really about.

      Your last sentence: “unsubscribe . . . and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on” is priceless. YOU clearly don’t know what “really” goes on – what really goes on is that Komen only donated 14% of the money they raised in 2011 to research. You can claim all you want that Komen donates more money to research than any other organization but the truth is that they pocket the money and dump it in to salaries and “awareness” and “education” (whatever that is). People are dying. The fact that Komen only used 14% of the funds that good hearted peopled donated “for a cure” to actual research is despicable. They have taken the lion’s share of the money raised for breast cancer research and instead of putting it towards research that money goes to six figure salaries, pink-porta-potties, pink golf carts and failing races for the cure.

      ‘nough said.

  24. claire January 14, 2015 at 7:55 AM #

    We should get together and take a class action suit against koman foundation for exploitation on cancer victims and survivors. She did thus same thing to me when I called her new York line. They told me to call my local news station for help!

    • cancerfree2b March 9, 2015 at 11:17 PM #

      Hi Claire,
      Thank you for your comment. I am so sorry that they did the same to you, I guess I shouldn’t be surprised, but seriously, telling you to call the local newspaper?!! Unbelievable. I would definitely like to know of others stories, I am sure you and I are not alone. What state are you in? I am curious what chapter told you to call your local news station, so unbelievable. It makes me sick. I hope you are doing well otherwise. Thank you for your comment. Please stay in touch. All the best, Lisa xoxoxox

Trackbacks/Pingbacks

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