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.
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”.