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Pinktober is almost over . . .

30 Oct

I haven’t written a blog post in a while. I set out to write one today and saw that I had a comment from Jenn (see below) on an old blog post entitled: Komen Please Leave Me Alone

Here is Jen’s comment – I just had to share (you will find my response to Jen below her comment).

Jenn
Submitted on 2012/10/09 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…
Here is my reply to Jen:
Panera Bread

Panera Bread is supporting Dr. Susan Love’s Army of Women – Good for them! (Photo credit: Wikipedia)

Submitted on 2012/10/30 at 10:21 AM | In reply to Jenn.

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, 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 starting to diminish. 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 – that is 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.

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More on Julie of Komen . . .

17 Mar

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):

Supporters of Planned Parenthood

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

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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.

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Komen Only Responds When the World Notices . . .

9 Mar

Like many nights, I could not sleep last night.

So after tossing and turning, I decided to open up my trusty laptop and catch up on some things. I opened my email account: nomorecancer4me@gmail.com

(I know, it has a nice ring to it, doesn’t it)? If we could all just wish ourselves to being well forever, now that would be something.

Anyway, I digress.

To my shock, I received an email from Julie at Susan G. Komen at Orange County. WOW. Her email was in response to my post of last October asking Susan G. Komen to leave me alone

Here is what Julie had to say (and to be fair – you might want to read my post above first):

“Hi Lisa,

 I’m writing regarding a blog post of yours referencing our affiliate:

 https://cancerfree2b.com/2011/10/31/komen-please-leave-me-alone/

I’m very sorry to hear your frustration with us. I am new to Komen and was disappointed to read about how you weren’t able to get help from us in the time you needed it most. In reading your post, I understand that you would like for us to no longer contact you. My guess is that you registered for one of our Race for the Cure events and are now on our database. Did you register with the “nomorecancer4me” e-mail address? Just trying to make sure we take you off of our list per your request. Rest assured I want to do everything in my power to make sure this doesn’t happen again.

On a personal note, I wish there was something we could do NOW to rectify this. I am very sorry for how things turned out. Again, being new to the organization can only do what I can now.

If there is ever anything I can do to help, please feel free to reach out.”

Julie A. Guevara

Manager of Marketing & Communications

Orange County Affiliate of Susan G. Komen for the Cure

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

Wow, do I ever have a post coming in response to this. For now, I will simply share some of what I wrote to Julie at 3:00 am in this morning.

“Hello Julie,

 
So, let me get this straight – the person (you) who was chosen to respond to me is someone that is “new” and can only “do what you can now” which is apparently limited to taking me off of your email list? I am sorry, but, this is so sick to me.
 
You say that, “on a personal note” you “wish there was something that Komen could do NOW to rectify this” . . . Okay, I am ALL ears . . . what can you do, what can Komen do, to rectify this? How can you help me “NOW” as you put it (the emphasis was yours)?
 
I received nothing from Komen. I spent what little energy I had during treatment barking up a tree that your organization encouraged me to bark up and instead of getting any response, I was simply ignored. Where do all the millions go? Rachel was on to Komen long ago. And now, since the Planned Parenthood fiasco – many others are too. I am not alone in my outrage.

Please understand that it is hard for me to even respond to your email when I feel that the only reason I am finally, now, hearing back from anyone at Komen is due to the fact that I spoke out, spoke the truth and that this truth got traffic. It was fine to ignore me when I was weak and sick . . . too weak and too sick to spend precious energy writing the truth. I may be broke now, but, I am strong and I am angry – not at you personally – but at the fraud that I believe Komen has become.

 
But, since you asked me to “reach out . . . if there is anything you can do” . . . well, I am reaching out NOW (AGAIN). Finally, after two years someone has responded to me directly. Sadly, it only happened after my blog post received thousands of visitors (this same post still receives thousands of visitors and gets retweeted around the world). I would love to be able to tell a second truthful story about Komen that paints a different picture – so here is your chance, Help me. Help me like you (your organization) claimed you would help. Come through on the promise that was dangled in front of me, that caused me to call over 100 times to the help line that NO ONE EVER answered.
 
As anyone who has been through cancer knows, it wreaks financial havoc. I had to shut down a business for nearly two years, I ran through all of my savings, I no longer have a car that is working properly, I am broke. I can not afford to maintain my health insurance. I can not afford my prescriptions, I can not afford the gas it takes for me to get to my oncologist. I needed help when I was going through treatment and I need help now. The stress of unpaid medical bills and the stress of not being able to make ends meet is a great burden. Stress is not good for anyone, and it is especially not good for cancer patients.
 
So, what can Komen do for me? I don’t need pink ribbons, I don’t need 5k walks with rose ceremonies. I need something concrete, something tangible. We all do. In 1994 I lost my Aunt to breast cancer. I found it odd back then that your organization didn’t seem to be able to do anything for her, no support. And yet, after she passed away, I ran your 5ks in her honor, thinking, believing – like so many – that this would somehow make a difference to women in the future. After all, you are “racing for a cure” right?
I am not saying Komen has done nothing good. I am saying that Komen does not do enough AT ALL. The money is squandered. At least that is what I believe. And to brag – as your organization bragged in 2009 and 2010 when I was going through chemo and radiation – that you helped women financially – and yet you never answered the phone – well, that is just about as ugly as it can get. (And by the way, this is the only phone number that was provided at the time and only point of contact for all of this financial assistance your organization claimed to provide. There was no way to leave a message, no email contact, no online form to fill out to ask for help – those things only exist for your donors. There are plenty of forms and live people to reach if you are a donor – why you are simply a click away to those who want to donate money).
 
I am angry. (I am sure you don’t need me to tell you that). I am not personally angry at you. But, I am angry at Nancy Brinker and I am angry at the organization that I once blindly (as once did my family and friends) supported. Many people are angry and share my outrage at being mislead. I want to see a different Komen.
 
You told me to “reach out” to you for help. I need help. I am reaching out. So I will wait to hear back from you. 
 
Please help me.”
 
So, that is basically what I said (at 3:00 am). Not the most well thought out email and perhaps I should have saved it as a draft and edited a bit before I sent it out. Had I taken more time, I would have addressed this point in Julie’s email to me:

“Just trying to make sure we take you off of our list per your request. Rest assured I want to do everything in my power to make sure this doesn’t happen again.”

So Julie’s big concern is that she makes sure “this never happens again” – that Komen never hits me up for money again. WOW. I see their point, why should they waste their time asking me for money when they know they will NEVER get it from me again? But, why is it that Julie is not concerned about making sure there is a person to answer their phone at the number Komen provides in their claim that if you call that number you can get financial help? Why is it that Komen never responded to me, EVER, until my blog post was read by thousands? Why is that when they do finally contact me, that it is a person from marketing?

Hmmm . . .

 

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When Pigs Fly: More Thoughts on Komen . . .

24 Jan

This year I could not have been more grateful for the month of October (aka: Pinktober) to end. Next year, my plan for getting through Pinktober (and SGK’s pink peddling and pushing) is to simply do all of my grocery shopping online and at local farmer’s markets. I want to limit my exposure to the sea of pink. And, I don’t want to be asked again at a grocery store checkout stand if I want to donate to Susan G. Komen “Race for the Cure” [sic] (And by the way, I mean “SIC” as a double entendre).

Just one of the many pink products sold all year long: a Komen Pig Note Pad. But, take a closer look below . . .

When you’ve had breast cancer you have a whole different insight into the world of pink ribbons, pink products, 5ks and three day walks and so on that are all supposed to raise money for a cure and to help women (and men) with breast cancer. I used to think that SGK was using their money to benefit women with breast cancer and to help find a cure. But, I learned quickly, the hard way, that SGK will not be there for you if you need their help. See my earlier post on how SGK abandons breast cancer patients and leaves us in the cold. (I personally called SGK’s advertised phone number that breast cancer patients are invited to call for financial help over 100 times) and not once did I ever reach a live person, not even a voice mail where I could leave a message – in my opinion – what they did – what they did NOT do – while claiming that they would do something – was fraud).

I know many people who love the pink ribbons and love the Susan G. Komen Foundation and their pink rose ceremonies and pink balloons and 5k walks and  – sadly – they think that buying pink will help eliminate breast cancer . . . one day. They think that buying pink will somehow help someone like me.

So why am I talking about this in January now? I was out picking up some office supplies at my local Staples store and did a double take when I saw all of the Christmas displays and seasonal products for the holidays replaced with pink, pink, pink. Seriously? Is it necessary for this to be a 12 month thing now?

I decided to take a stroll throughout the store and take in all of the pink, just curious about whose name is on it and where this pink-breast-cancer-curing-money is really going. Nearly every product I saw at Staples that was pinked was done so in the name of the Susan G. Komen Foundation. Not much of a surprise really.

Maybe when pigs fly we'll have a cure . . . until then, by all means, let's keep "benefitting" SGK!

But, here is what really surprised me . . . they don’t even claim any more to be giving the money to “the cure”. Instead this is what the Susan G. Komen pinked products I found now say: “benefitting” The Susan G. Komen Foundation . . . at least they are being honest about it now . . . where the money from your purchase goes . . . “to benefit The Susan G. Komen Foudation”.

It certainly did not go to benefit me or anyone I know who has had, survived or died of breast cancer. I love this complete lack of accountability (not). I guess it is just par for the course. The sad thing is that people buy this stuff thinking, believing that it will actually lead to a cure . . . yeah, maybe when pigs fly . . .

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