So, if you have been following my blog as of late, you will know I have – after three years – finally heard from someone from Komen. I posted Julie’s latest email two posts ago. I responded to her here on my blog. But, upon further thought decided I would respond, again, to her personally (even though I feel it is likely a complete waste of time). So, here is my reply to Julie (brace yourself, I am not happy about the fact that I STILL have not heard back from anyone in Komen’s financial assistance program – still only PR & marketing – which I feel speaks volumes):
For so many women PPH is the only place where they can get screening for cervical cancer and breast cancer. Thank you SGK for pulling the plug on PPH because you only encouraged others to help fill the void. Then after you were shamed into returning the funding to PPH - has both your funding back and the funding of those who sought to fill the void you intended to create by abandoning PPH. I am ecstatic that you pulled the plug on PPH as it has wakened the world to how SGK has truly lost its way.
Julie,
I posted a copy of your email on my blog and included a reply to you there. I believe that you believe in Komen. But, I think you fail to see that Komen has lost their way. The rest of the world has pretty much caught on to this fact. My personal experience is not unique. And, sadly, it is the tip of the iceberg.
In any case, as I said in my reply on my blog, your organization wears me out. In my opinion, Komen is nothing but smoke and mirrors and double talk. You told me in your first email to me that you “wished there was something that Komen could do to ‘rectify the situation’ now” . . .
And, you asked me to reach out to you if I needed help. So, again, in response to Komen’s invitation (this time, by you personally), I reached out and instead of any help, you simply reply with a defensive email – without any sensitivity to the fact that your organization failed me and has failed countless women in the same fashion.
You/Komen wear me out because you keep making promises and invitations for me (and scores of others) to ask for help and then when we do, your response is to ask me how you can help. Do you understand how frustrating and pointless this is to me and to the many, many other women who have contacted me telling me that their experience is the same?
Instead of defending yourself by saying that you were not at Komen in 2009, why not try to fix the problem. The phone number doesn’t work, no one has EVER contacted me from financial support, not EVER. All I get from Komen are constant requests for me to donate money to your organization and now, finally, after thousands of people have viewed my blog (a blog that does not cast your organization in a very positive light) YOU (someone from PR and marketing) respond to me. Your response is completely empty in my eyes. How dare you ask me how you can help me and then when I tell you how you can help me, you get defensive and do not respond to my request for help except to AGAIN ask how you can help me . . . this is so completely illogical and circular and crazy making. Stop wasting my time – I might not have much time left – don’t you people get that??? How dare you/your organization dangle help, mislead me and so many others into believing that it is worth our time to call and waste our energy on trying to reach someone for help through your organization. It is a complete joke.
And just as so many of us out in the blogosphere suspected, Komen has a whole staff of people whose job it is to “be in the know” about what is being said about your organization. PATHETIC. It is very clear to me that your organization is far more concerned about protecting its brand and money making machine than it is about a cure or helping breast cancer patients.
I do not understand why you are not getting this in front of someone who can fix the problem – that no one can reach anyone on your “financial assistance” phone number . .. why is that?
I am not going away (unless cancer takes me away) and I promise you that I will keep spreading the truth about your organization. I just hope that one day the truth will be that real money goes to a cure (instead of a paltry 14 to 19 percent), that your financial assistance phone number is one day answered by an actual person or at least a voice mail that allows a person to leave a message, that you will provide a contact form or email to breast cancer patients who are seeking (by your organization’s INVITATION) financial help, that your organization will start making funding decisions based upon women’s (and men’s) health instead of politics. (I understand that Komen pulled 12 million dollars in research funds last year to research facilities that had anything to do with stem cell research, is this true)??? That is what I heard. And then of course, there is the recent Planned Parenthood fiasco.
Do you realize what cutting millions of dollars from research facilities that engage in stem cell research means? It means that top, leading research facilities do not get money from your organization – all around the world leading research organizations are involved in stem cell research – so your organization is cutting funding (as I understand it) from the very places that might be most likely to develop leading, cutting edge treatment and possibly a cure.
Your new tagline: “We Are the Cure” makes my stomach churn.
I will not let up. You have no idea how many of us are outraged that it took three years for your organization to contact me and that the person who finally contacted me only did so in response to the traffic my story received AND that this person was from PR/Marketing. You may have the best of intentions, but, I hope you can understand and appreciate why so many of us are disgusted by all of this.
I realize you are not responsible for Komen’s funding decisions or for the fact that no one ever answered one of my over 100 phone calls to the financial assistance line. But, you work there now. So, I hope my story (and the fact that it is absolutely not unique) will wake you up a bit to the realities of the machine you work for and maybe inspire you to work from within to make positive change.
I can only hope for this.
Until then, I will (along with scores of others) continue to write. So, I guess we are going to keep you pretty busy staying “in the know about what is being said about Komen”.
Best,
Lisa
cancerfree2b 
Wow, this is disgraceful. I have not had a warm and fuzzy about Komen for a long time but this…this is just terrible. I am glad you shared your story. I hope that Komen “hears” it and makes some radical changes!
Thank you for your comment. I appreciate it. I wasn’t strong enough when I was sick to stand up to SGK. I wasn’t strong enough then, when I needed their help, when they invited me and scores of other women to call them for financial help, to tell the world that SGK was a fraud – a number listed to call with no one on the other end . . . EVER. I had to focus on treatment and surviving and figuring out how to maintain my health insurance after I was too sick to continue working.
I didn’t have the energy to address SGK. But, now I do. And, after we lost Rachel and Susan to metastatic breast cancer (something SGK only puts 2% of their research dollars towards) well, I am beyond, beyond disgusted.
Now their tagline is: “We Are The Cure” . . . whatever.
Thank you for your reply, I really appreciate it. Please spread this around, people need to know the truth.
All the best to you,
Lisa
Since I shared my blog post last month (http://dinoiafamily.typepad.com/the_dinoia_family/2012/02/i-never-thought-id-blog.html), I have had oodles of people come out of the woodwork to share in the disgust. It appears many have thought little of Komen for years, but were afraid to say anything, lest they offend me or someone else affected.
Yet, how could I be offended when Komen did nothing for me? I already loathed them when I received my dx. I did not receive any help from them (I didn’t ask, to be fair), but it took me ages to get off their darn mailing list. My husband finally had to call and beg them to just give it up.
They are shameful and they disgust me and I am just happy to know so many others feel the same way. I can’t wait for the day that I can do a happy dance…you know, when they close their doors for good and new organizations (who HELP people and don’t just color them pink) grow and succeed in their place.
They are NOT the cure. big ole money hoarders. You tell ’em!!!!
Thank you for your comment. I agree, they are certainly NOT the cure.
Happy Day after St. Patrick’s Day to you!
All the best,
Lisa
Hi Lisa,
I think your response is perfect, although I doubt you’ll be hearing back any time soon.
“You/Komen wear me out…” Love that.
Komen is starting to wear everyone’s patience out. I do believe people are starting to think twice about them. Keep on speaking out. Your voice needs to be heard!
Thank you Nancy,
Komen truly wore me out during treatment and they continue to do the same. I am dumbfounded that they are as stupid as they are . . . that they were so arrogant to presume that they could pull funding from Planned Parenthood without a public outcry. And, admitting in emails to me that they have a whole staff of people dedicated (I presume these are paid employees) to “be in the know” about what is said about Komen. Good grief . . . how dumb are they to admit this when we are all hopping mad about where the money is NOT going. AND to have a PR/Marketing person contact me and STILL no one from their supposed financial assistance program and STILL no explanation as to why my over 100 calls to them were never answered and STILL no explanation as to how they are going to fix this problem. SIGH.
They really are very, very dumb. (In my humble opinion).
Thank you for your comment.
All the best to you my friend,
Lisa
Thank you for keeping us informed of the ongoing saga. Your tenacity is to be commended, Lisa. And it is such a great point about having a PR person contact you instead of a person in the alleged financial assistance program. The fact that you had more than 100 calls go unanswered is astounding. Keep it going, cancer rebel. Onwards and upwards! — Gayle Sulik
I just thought I’d post the response I got when I emailed looking for financial assistance.
“Dear Denise,
Thank you for contacting Susan G. Komen for the Cure®. I am sorry to hear about your diagnosis. The situation you describe is unfortunate and it sounds like you are experiencing great difficulties. Susan G. Komen for the Cure® promises to save lives and end breast cancer forever by empowering people, ensuring quality of care for all, and energizing science to find the cures. We are unable to offer financial assistance directly to patients; however, I would like the opportunity to speak with you via telephone in order to discuss ways of obtaining the assistance that you need. Please tell me what days and time are best to reach you.
I look forward to hearing from you.
Regards,
Jacqueline
Jacqueline Socastro, LCSW
Director, Susan G. Komen for the Cure® Breast Care Helpline
Contractor on behalf of Susan G. Komen for the Cure®
275 Seventh Avenue, 22nd Floor | New York, NY 10001”
Thank you for your comment.
May I ask when this was (the year)? In t009 and 2010, at the time when I contacted them, they claimed that they DID offer financial assistance to women going though breast cancer (they advertised on their website a number to call for assistance). When I got no answer after calling over 100 times, I contacted the local Komen office here in Orange County and they referred me to the Salvation Army and to the American Cancer Society (neither of which were able to help me). Anyway, I highly doubt that when people donated money during 2008, 2009 or 2010 to Komen that they thought Komen would be a referral office. It is fine if they want to give the money raised to a cure only and not to helping women who are going through treatment. But, they mislead me and countless others (both donors and cancer patients) into believing that they would help patients financially. And, in my opinion, the number they dangled out there for me to call (the one they advertised on their website) was never intended to be answered. They clearly never had anyone employed to answer it. And I think it was simply put up on their website for looks. I really do believe that. That is why I called every day, all times of the day for months and months and months because I wanted to prove that – or be proven wrong.
I never got a letter from them (although Julie has been writing to me lately). I highly doubt she will be allowed to respond to me any further so I am going to start writing directly to the head of the beast – Brinker. We shall see where that gets me, I am sure no where. But, my point is to draw attention to the way they have failed me and so many others.
What they seem to be really good at is branding – and in their own branding – it is like a shell game – “we help breast cancer patients financially” used to be part of what they took credit for, but, then when it becomes made public that in fact they don’t, like a shell game, they change it up and say that they are committed to other things – all under the umbrella of “We Are the Cure” and Nancy Brinker’s “promise” to “end breast cancer forever”.
Shell game.
Thank you for sharing your experience here. Just curious, was SGK able to refer you to any financial resources that you could take advantage of?
Thank you again for your comment.
Best in health,
Lisa
Lisa, you totally rock! You are one of the several people I was thinking of when I wrote my current post: http://accidentalamazon.com/blog/2012/03/14/broke-the-cost-of-breast-cancer/
Believe me, it’s only the first of several I plan to write about how expensive it is to have cancer, and how difficult it is to get financial help when you need it.
Komen’s inability to see the forest for the trees absolutely amazes me. Their ridiculous recent ‘survey’ only invited feedback from supporters. Heaven forbid they pay attention to those of us who’ve had their number for years now. But as you said, we are not going away.
Grumble on, my friend.
Hi Lisa,
I emailed them a query back in October of 2010. I’d ended up homeless following treatment. When I saw that response I was so disgusted I never followed up. I didn’t need another referral to the local welfare office and I knew that’s what they were going to tell me. They had advertised that they GAVE financial assistance, so when I had that email in response, I pretty much threw my hands in the air and said “eff it” (so to speak).
Since then it has become my mission to educate ALL of my friends and family to question WHERE their money goes when they make a donation. I would happily see Komen go down in flames so the money could be directed to organizations that really DO want to find a cure.