cancerfree2b

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.

Tags: breast cancer, breast cancer treatment, health, komen, medical costs, race for the cure, survival, Susan G. Komen