Topic: The big "PINK" Picture

Forum: Employment, Insurance, and Other Financial Issues — Employment, insurance, and financial concerns are common. Meet others here to discuss and for support.

Posted on: Oct 6, 2010 05:00PM

Posted on: Oct 6, 2010 05:00PM

pickle wrote:

Okay I am going to vent here so please be warned...read at your own discretion.

I am somewhat perplexed with the range of emotions that October PINK month bring out. Am I naive...am I detached..Am I out of my league? Why are so many people pissed about October? I know corporations market their stupid products and maybe a miniscule amount goes to BC...but a little amount is better than nothing.

I haven't seen any other campaign or fundraising effort for any other cancer that brings as much to the table ($$$) as the Pink October month. Although women die of other diseases more frequently than BC somehow we have still manged to dominate the fundraing spectrum. Isn't that remarkable? Women have an amazing amount of power and influence. Embrace the pink and be grateful that it is still at the forefront...it hasn't been set aside yet...and let's keep it front and center. If we aren't front and center then won't we be left behind?

I understand that October is a serious bone of contention for many....some are  sick of the awareness camapign and dammit...I agree...where the hell is the cure? However I must confess that I believe there is still a lot of education to be done on awareness. I was totally caught off guard with my ILC. I am educated and well informed. I look after my health... but no one...no one!...ever told me to look for anything in my breast but a lump...well ILC doesn't work that way. It is a thickening...a change in tissue...not a little round lump. If I had been "aware" of what to look for then maybe I would have been dx earlier. What about the IBC women here. Have they been educated on anything other than a lump? Not likely. Young women with IBC are brushed off...mastistis...rash...infection etc...but then...they discover IBC.

There is still so much reasearch to do...we need a cure...too many sisters have progressed....keep the pink highlighted for them.  And also  remember that education and awareness is still necessarry too.

Big hugs to all my BC sisters and may none of the future generation have to deal with this ugly beast.

Respectfully

Beth P

Dx
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Oct 7, 2010 09:13AM - edited Oct 7, 2010 09:14AM by lovemygarden

Madalyn is so right: "This is not a cute, pink, fluffy disease." It is also not (or more correctly, SHOULD NOT BE) a marketing opportunity, nor a (very effective, btw) vehicle for company A, B, C, D et etc to increase their corporate bottom line - especially in the month of October. Unfortunately it has been co-opted to be both of those things. There is an illuminating article in another thread on this topic wherein several economists discuss how the use of The Pink not only increases a company's sales of those particular products but also their sales across-the-board because the Pink usage can skew a consumer's perception of that company into a more favorable light than previously (whether or not the company actually deserves it).

 And it is so true that we can't see where all the money raised is going, and what is more, how much (what percentage) of each donation goes to what purpose. AFAIK the only organization that donates 100% of all contributions to RESEARCH is Stand Up 2 Cancer. So if you donate say $100 to SU2C, you know that every cent of it is going to fund what you want your money to fund. However, organzations like the ACS, Komen, etc etc take varying percentages of contributions to pay for all of the overhead that running any BUSINESS -- and make no mistake, these are businesses first and foremost -- entails. I wonder how many people would donate $100 (or spend $100 on Pink Products) if they were informed that only $10 of it went to either research or education and the rest went into some corporate pocket? Not many, I bet. 

It is true that $10 is better than $0. But personally (and this would apply whether or not I could easily afford the hypothetical $100 spent) I would rather know that every one of my hard-earned highly-taxed dollars are going to whatever I am interested in supporting.

As far as finding a "cure", well, I am very cynical about that. Cancer is a far more complex disease than, say, polio (and think for a moment about how it took to come up with a vaccine for that); before a "cure" (or effective preventive) can be found, the causes  -- plural very intentional -- must first be found and we are a long way from even that. I think the best we can hope for in the lifetimes of our daughters or granddaughters is more effective targeted therapies for cancers that are diagnosed. The therapies we now have, such as Herceptin, were a huge step forward but even they are not "the answer" because the statistical response rates are relatively low; IMHO, a response rate below 50% does not deserve to be called a "miracle drug" -- it is surely that for those who respond to it, but not for the majority. This is why my personal preference is for the funding of research, equally into causes (for future cases) and targeted therapies (for those who already have cancer). 

"Awareness" is, after all, an after-the-fact strategy. It affects the actual DISEASE (or anyone's odds of ending up with it) not one whit. 

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Oct 7, 2010 09:34AM Leah_S wrote:

I live in Israel, so the whole "pink October" thing doesn't happen here. That's why I stay out of most discussions on this issue.

The one thing that angers me no end, though, is the recent "save the boobies" thing I've occasionally seen. WTF??????????? I am Stage IV THE HELL WITH SAVE THE BOOBIES!!!!!!! SAVE MY LIFE!!!!!!!!!!!

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Oct 7, 2010 09:38AM lovemygarden wrote:

I've never even heard of "save the boobies" -- you mean there really is such a thing/campaign??!! Surprised

Hell, it was my decision to get rid of both, even though I was only Stage IIA/no nodes in just one of them. And I don't regret it for one single second. 

"Save the boobies" sounds like it was the brainchild of some mammary-fixated male. Oops, am I being a female chauvinist pig? Well, then, I say OINK!  Tongue out

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Oct 7, 2010 10:50AM - edited Oct 7, 2010 10:51AM by Annabella58

If I can chime in here, I did feel that way in the beginning about the excessive pink.  It was a nasty reminder that I could not get away from in any way, wherever I went.

However, it does help my daughter.  When she sees it in a store, she feels better, thinking that there is something being done to help me.

So, I try (try) not to be personal about it.....since it is something that helps my kid, I try to ride out october and just look the other way.  Do I find it silly, since it doesn't raise much money?  Yeah.  Do I feel we get used as a marketing tool?  Yeah.  Wll I buy the stuff? No.

People give me stuff all the time, or assume that somehow every single woman with BC knows all the others.  It is a special club, but I'm pretty sure no one wanted to join it. 

.....just try to get thru the month.  I am one that coped with humor, so I do get the T shirt, but also understand how some might find this hurtful/not funny.

We are all just getting thru this, as best we can.  I will wear pink, but only because I like the color, I don't associate myself with it.

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Oct 7, 2010 10:51AM nwshannon wrote:

I agree with all of you ladies it is so very important to let people know to research exactly where the proceeds go when they donate to a BC Cause because like it or not in alot of cases only a small portion goes towards research for the cure. I am new to all of this and my journey with BC came at a early age 38, I am not married, single income, paying a mortgage & working full time. God bless my amazing boyfriend for trudging thru this jouney with me, we have had alot to deal with in the last few months but one thing we cannot believe is the cost of the bills that are being sent to my insurance company.....really, for goodness sakes why would a CT & simulation before my radiation treatments started cost $16,000.00 it is insane. My outpatient lumpectomy surgery was $19,000.00 Everyday when I open these bills I cannot believe my eyes, makes my heart hurt for those that have no insurance, thank god I do but it is still costing me a boat load of money, 20% that I have to pay until I reach my $6000.00 yrly max then 100% is paid but that 20% adds up FAST!!!!! So when I go to safeway a few days throughout  the week & they ask me if I want to donate I just have to snicker, if only they knew! I am sure to always research where donations are going that is for sure! I sure hope the health care system gets put under control some day as well!

Dx 7/9/2010, DCIS, 1cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR+
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Oct 7, 2010 11:32AM Lowrider54 wrote:

This year, my opinion is different than it has been - I was still in shock last year since I was just dx'd stage iv. The 'Pink Parade' does raise many things - good and bad:  

- There is no other disease that is afforded an entire month

- There is only 1 day - October 13th - that just last year passed in a bill to be declared 'National Metastatic Breast Cancer Awareness day

- It is a tremendous marketing tool and does result in a substantial amount of money raising and we have new treatments although still no cure

- Only 1% of all the funds raised is devoted to stage iv breast cancer research

- Companies and others like the NFL only do something during Pink October

- Susan B. Komen works year-round in their fund raising efforts

I could go on but I think the point is that it does raise money and however much or little actual gets to organizations and research foundations, I am thankful to have kinder treatments now that I am stage iv due to the efforts of the Pink.  My personal issue with it is that my first battle with the beast, I got some help during treatment but absolutely nothing was available to me the next morning - still sick and tired and used up and financially rocked - there was not a taxi ride, a meal, a bag of groceries, a dollar, nothing - I worked and made too much money for public assistance and no cancer related agency of any kind had anything to offer me as a single mom who worked.  I was very anti-pink.

Now, at stage iv - I am rather mixed in my feelings - thankful for kinder treatments but outraged that it is made to be all pretty and pink when stage iv breast cancer is anything but pretty and is absolutely not curable.  Not that any breast cancer is pretty but early stages can be erradicated, treated and live cancer free - stage iv is treatment until we die or just say 'enough'. 

I have never donated or run or walked but this year - I did give a donation to a wonderful gal who works so hard all year round for the cause.  I told her to spread it over many events or just use it for one - whatever - with a great big thank you for all she does! 

And dern it, I like the color pink...

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Oct 7, 2010 11:40AM Suzybelle wrote:

The thing that bothers me the most about the whole thing is that the pink ribbon has become an industry...and there is so much money that is made as a result of a disease that causes women to suffer and die - and it's festive, pink and happy...and that really ticks me off.  And while there have been improvements made in early detection, the stats as far as deaths and invasive cancers have not really changed.  In many cancers, that's not the case - there are big improvements.  But not in breast cancer.

It bothers me that many of the very corporations who make tons of money as the result of this disease and it's treatment are some of the biggest perpetrators of the 'pinking' that we see.

I know I sound bitter and cynical...I'm sorry.  I hope I haven't offended anyone with my 'pink pill bitterness'.

Dx 1/27/2010, ILC, <1cm, Stage I, Grade 2, 0/10 nodes, ER+/PR+
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Oct 7, 2010 01:32PM 1Athena1 wrote:

2tzus,

Your excellent observation exposes the ugly truth that there are many, many people getting rich with the status quo in cancer. Pink October is thriving, while sisters are dropping dead like matchsticks - sorry to be so graphic, but just think of the many we have lost on this board. 

Pink October is an embarrassment of wealth and pageantry fattened up by the money of the fearful, the suffering and the almost-dead, with very little in the form of deliverables. And 40 years after Nixon declared  War on Cancer, apart from the American Cancer Society, which stands to profit hugely from the polluters that fund it, most people agree that we are nowhere close to winning it. The exception lies in some pediatric cancers.  

So Pink October is, if anything, a rather pathetic celebration of how much awareness there is and how that amounts to nothing in the cure department.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us. Dx 3/2009, IDC, 3cm, Stage IIB, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Oct 7, 2010 02:24PM Lowrider54 wrote:

2tzus - OMG - that is simply, well, words can't begin to express my thoughts at the moment. 

I wonder what it would take to get an accountability of the funds raised and where exactly they do go - not the sugar-coated public version but an honest accounting - as a 'not for profit', that information should be available. 

I think this puts me squarely back into anti pink but still thankful for the kinder treatments - I think I will just move past pink and focus my thoughts on Halloween and pumpkins and black cats and witches and fall leaves turning and the colors red and black and orange and purple.  That is what October should be about - not pink.

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Oct 7, 2010 02:42PM lovemygarden wrote:

Lowrider, I hear you loud and clear about the lack of practical help from any of the cancer organizations for those of us who are trying to keep financial disaster at bay while going through treatment. This is what I would LIKE to see some of the "biggies" doing for us (please bear with my pipe-dream!):

* Advocate on our behalf for state and/or federal laws saying that uninsured patients (or patients who do have insurance but do not have coverage for cancer treatment OR are in the midst of a 6 to 12 month waiting period for coverage of same) CANNOT be charged more for services, tests, treatments etc than the highest amount that the provider gets from an insurer. In other words if the most that Radiologist Jones gets paid from any plan they participate in, for doing a MUGA scan, is $350, then Dr. Jones cannot charge Mary Smith (who has NO insurance) $950 for doing the same MUGA; Dr Jones could only charge her $350. (FYI, anyone who thinks that the vast majority of radiologists are NOT charging Mary Smith close to $950 right now, is living in a dreamworld!)

Personally I would rather see my above-described hypothetical law say that Dr. Jones would have to charge uninsured patients NO MORE THAN the LOWEST fee they accept for that MUGA -- which is usually the Medicare rate. That would even be better, but even something saying "no more than the highest" would be better than the status quo, which is "Soak the Uninsured For Full Price Unless They're a Documented Charity Case."

*Establish a financial-aid fund for current patients that does not require them to be practically two steps from living in a box on the street in order to qualify for help. Perhaps the patient would only need to prove that they have no coverage via a notarized statement from her provider (surgeon, oncologist, whatever) that they are self-pay. And after someone is in the fund's program, they could send copies proving what they paid out of pocket for cancer-related expenses, and the fund would then send them a check representing a set percentage of that amount. Let's say it was 30%. A patient who negotiated her best self-pay price for her breast ultrasound of $200 could send in the paid bill and the Fund would reimburse her 30%, i.e. $60.

Lest you think the $60 is a piddly amount, I can rattle off a few things that $60 could buy: 

- Three fillups of my gas tank

- A week's worth of groceries

- Half of my monthly electric bill

and so on and so forth.

Ah, but I am only dreaming, I know. Perfect world, and all that.

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