This is just wrong
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Topic: This is just wrong
Posted By: mainsailset
Subject: This is just wrong
Date Posted: Feb 01 2012 at 12:23am
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No matter your political leanings, the idea that Susan Komen has pulled their grant support for Planned Parenthood to fund cancer screenings is just plain wrong.
http://thinkprogress.org/health/2012/01/31/415821/nations-largest-cancer-charity-caves-to-right-wing-pressure-ends-relationship-with-planned-parenthood/ - http://thinkprogress.org/health/2012/01/31/415821/nations-largest-cancer-charity-caves-to-right-wing-pressure-ends-relationship-with-planned-parenthood/
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Replies:
Posted By: Katherine
Date Posted: Feb 01 2012 at 7:04am
Sigh...
------------- Diagnosed 7 November 2009 (age 42) with grade 3 TN IDC (2 cm) and TN DCIS. Two lumpectomies (for clear margins), 3x FEC, 3x taxotere and god knows how many rads.
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Posted By: Charlene
Date Posted: Feb 01 2012 at 7:35am
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I will not support anything that benefits Susan G. Komen until this gets changed. Very disappointing!
I also think they are far too protective of the "for the cure" logo.
Charlene
------------- DX 3/10 @59 ILC/TNBC Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED
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Posted By: 123Donna
Date Posted: Feb 01 2012 at 8:22am
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So disappointing. No support for Komen from me either.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Feb 01 2012 at 10:22am
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I wonder if there is an online petition being formed. I tossed and turned all night thinking of the women and their families who may now see their health jeopardized.
No one better than our community and those that share our situation understand the sheer terror of going down this road and to think of having any kind of funding pulled is just beyond imagination.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: mitymuffin
Date Posted: Feb 01 2012 at 1:07pm
I agree with you!
------------- Diag. Triple neg. 4/23/10 Stage IIB, 3.2cm, grade 3, 1/11 lymph nodes, lumpectomy 4/23/10, AC + T + Avastin, clinical trial 5103, Rads, age 59
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Posted By: cheeks
Date Posted: Feb 01 2012 at 1:31pm
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I agree -tooooo much politics everywhere right now especially with elections looming - what is the motivation for such craziness??
Blair
------------- Lump found 11/08 DX: 2/09 @52 TNBC L. Mast. 3/26/09, SN-, BRCA-, 4.5 cm (post surgical)T2NOMO Chemo: 4/09-10/09 Taxol x 12, A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Posted By: mainsailset
Date Posted: Feb 01 2012 at 1:43pm
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A friendly birdie sent me the link to this Credo petition, so here it is for all to add their names
http://act.credoaction.com/campaign/komen_2/?rc=fb_share1 - http://act.credoaction.com/campaign/komen_2/?rc=fb_share1
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: cheeks
Date Posted: Feb 01 2012 at 1:45pm
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M,
Thank the friendly birdie  signed, sealed and hopefully delivered and posted on my facebook for all my retired Medicaid eligibility coworkers to read. Breast cancer has nothing to do with whether a pregnancy is planned or unplanned - it's about the women.
Blair
------------- Lump found 11/08 DX: 2/09 @52 TNBC L. Mast. 3/26/09, SN-, BRCA-, 4.5 cm (post surgical)T2NOMO Chemo: 4/09-10/09 Taxol x 12, A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Posted By: ds21
Date Posted: Feb 01 2012 at 2:03pm
This is unfortunate in so many ways. It must be divisive within the organization and will hurt participation in SGKF sponsored events which ultimately is going to hurt a significant source of funding for breast cancer research. I hope they reverse this action promptly.
David
------------- Co-survivor
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Posted By: ds21
Date Posted: Feb 01 2012 at 2:08pm
@Mainsailset - the petition server is very slow to respond which is either a good sign, or someone is being nasty on the internet. Hope the former.
David
------------- Co-survivor
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Posted By: mainsailset
Date Posted: Feb 01 2012 at 2:19pm
David, apparently the site is near to crashing with the high traffic it is experiencing. Here's another article http://www.huffingtonpost.com/2012/02/01/susan-g-komen_n_1247262.html - http://www.huffingtonpost.com/2012/02/01/susan-g-komen_n_1247262.html The outrage is spreading so fast on this it is indeed viral. Luckily PP is noting that in the last 24 hours their donations have spiked tremendously as well as the discusion has opened the doors on awareness of the cancer screening value.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Charlene
Date Posted: Feb 01 2012 at 3:00pm
Mainsailset--took me two tries, but I signed the petition and posted it to my FB page.
------------- DX 3/10 @59 ILC/TNBC Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED
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Posted By: mainsailset
Date Posted: Feb 01 2012 at 3:55pm
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Makes me proud to see this community step up on this situation. I was a bit hesitant to bring it forth because of all the political hits that are being swung but then I thought that indeed the best way to remove the political heat is just to lay it out there as a human concern from the standpoint of 'there but for the grace of god go I'.
Hopefully that's the direction this wrongheaded decision will turn.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: christina1961
Date Posted: Feb 01 2012 at 4:05pm
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Signed and posted on my facebook but boy, did it start a firestorm!
------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Posted By: mainsailset
Date Posted: Feb 01 2012 at 4:09pm
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Christina, maybe I can help, what kind of a firestorm?
Here's a piece just posted http://www.washingtonpost.com/national/susan-g-komen-stops-planned-parenthood-funding-who-does-the-decision-hurt-more/2012/02/01/gIQAEvdLiQ_story.html - http://www.washingtonpost.com/national/susan-g-komen-stops-planned-parenthood-funding-who-does-the-decision-hurt-more/2012/02/01/gIQAEvdLiQ_story.html
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: christina1961
Date Posted: Feb 01 2012 at 6:04pm
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Mainy,
Thank you! I've got people arguing on my page, posting articles, etc.. I just posted the article you provided, and politely presented my position.
------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Posted By: overwhelmed
Date Posted: Feb 01 2012 at 6:20pm
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Thank you. I signed this petition in the middle of the night last night when I was unable to sleep. From what I understand much of what Susan G Komen does relates to bc awareness. They don't donate a tremendous amount to research (I recall Caryn Rose saying this during the last October of her life. I remember it, because it took me by surprise). Isn't providing mammograms and exams part of awareness? Poor women and minorities are already more likely to die of breast cancer because the diagnosis comes too late (and those of us with TNBC know that we need to be diagnosed asap). This is a step backward. Politicizing breast cancer is sad.
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------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: ds21
Date Posted: Feb 01 2012 at 6:35pm
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Whether or not they intended it, the Koman Foundation has stepped into a political firestorm
http://politi.co/yrUuwa - http://politi.co/yrUuwa
This is almost certainly going to impact their fundraising dramatically over the coming years.
David
------------- Co-survivor
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Posted By: dmwolf
Date Posted: Feb 01 2012 at 6:57pm
Boy does this piss me off. I just signed the petition and wrote them a letter.
------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Posted By: 123Donna
Date Posted: Feb 01 2012 at 7:13pm
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My whole family signed the petition, I posted to FB and sent an email to all my friends asking them to sign the petition. From a PR perspective, I think Komen is going to learn a very important lesson of what not to do.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: LRM216
Date Posted: Feb 01 2012 at 7:48pm
A million thanks, Mainy. Just signed it and posted to my facebook page as well.
------------- Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Posted By: debB
Date Posted: Feb 01 2012 at 9:22pm
I applaud Komen for bringing BC to the forefront and making it the issue that it is today. However, I find it incredibly sad when an organization that was founded to do good becomes such a money-making bureaucratic machine that it's primary goal seems to be to feed itself. The lengths they will go to in order to squash people using their copyrighted phrase is just mind boggling. I think this is icing on the cake that truly shows that they have lost their way. So sad.
Thanks Mainy for not only bringing it to our attention but for providing a way that we can act on it!
------------- Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Posted By: 123Donna
Date Posted: Feb 01 2012 at 11:23pm
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How many organizations are making money off the pink ribbons and us?< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">
http://www.youtube.com/watch?v=3QPZfcYTUaA - http://www.youtube.com/watch?v=3QPZfcYTUaA
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: denise07
Date Posted: Feb 01 2012 at 11:52pm
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Mainy,
I just signed this petition I sure hope this will help.
Thank you,
Denise
------------- DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Posted By: kirby
Date Posted: Feb 02 2012 at 12:01am
I wish I had seen this thread before I had signed the petition. I did add my comments but would have loved to let them know an entire thread was started over their actions.
------------- kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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Posted By: krisa
Date Posted: Feb 02 2012 at 1:18am
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I quit donating money to Komen years ago. I will only donate to TNBC foundation.
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Posted By: lisaorock
Date Posted: Feb 02 2012 at 6:01am
I can't believe this! My mom did the SGK Three Day Walk in Boston last summer. She was going to do it this year but after hearing this she is pulling out! I am so disappointed!!!!!
Lisa
------------- dx 10/5/10 IDC,lumpectomy 10/19/10,right masectomy 11/4/10,triple negative,BRACCA2+,4ACDD,4,age TaxolDD,age 45,left mx,recon,ovaries and uterus removed 4/21,then possible rads
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Posted By: lisaorock
Date Posted: Feb 02 2012 at 6:09am
I mean I am disappointed at SJK, not my mom!!
------------- dx 10/5/10 IDC,lumpectomy 10/19/10,right masectomy 11/4/10,triple negative,BRACCA2+,4ACDD,4,age TaxolDD,age 45,left mx,recon,ovaries and uterus removed 4/21,then possible rads
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Posted By: 123Donna
Date Posted: Feb 02 2012 at 7:56am
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Here is another petition I've seen floating around the web:
http://signon.org/sign/susan-g-komen-for-the.fb1?source=s.fb.ty&r_by=2278021 - http://signon.org/sign/susan-g-komen-for-the.fb1?source=s.fb.ty&r_by=2278021
If any of you are on FB, check out the official Komen page. They are getting lots of comments similar to what you are seeing here.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: 123Donna
Date Posted: Feb 02 2012 at 8:47am
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I found this interesting analysis of Komen's expenses. The following is an excerpt. Click on this link to read the entire article:
http://cancerculturenow.blogspot.com/2011/03/komen-by-numbers-2010-and-still-no.html - http://cancerculturenow.blogspot.com/2011/03/komen-by-numbers-2010-and-still-no.html
Komen recently released audited financial statements for the financial year ended March 31, 2010. The first chart summarizes how Komen spent the $389.3M it received in Total Public Support and Other Revenue ("revenue"). As in previous years, Education received the highest allocation of $140.8M or 37% of revenue; Research $75.4M / 19%; Screening $46.8M / 12%; Treatment $20.1M / 5%; Race for the Cure and Other Fundraising Expenses were $36.1M / 9%. The remainder was spent on Affiliate Relationsand Other Administrative Expenses of $40.6M / 10% and increase to Assets of $29.3M / 8%.
https://lh6.googleusercontent.com/-Q5HMpMAaS0I/TX6AoXw-0-I/AAAAAAAAAOE/prYHF4ve4PU/s1600/2010pie.jpeg"> The second chart, compares the results of 2010 in total dollars to all prior years for which financial statements are available from http://ww5.komen.org/AboutUs/FinancialInformation.html - Komen's website . https://lh5.googleusercontent.com/-E1ZmFiXSuno/TX6BLFWSjcI/AAAAAAAAAOI/8tnMzqTgnXc/s1600/Totals.jpeg"> Once again I have to question the level of Komen's investment in it's Research program. In 2009 the Research program received $70.1M or 21% of total revenue, and in 2010 it received $75.4M which, although a slight increase in terms of dollars, only represents 19% of total revenue. As this third chart shows, relative to dollars earned, allocations to the Research program (purple line) seem to be on a definite downward trend, whilst the other programs remain fairly flat, and Administrative Expenses (orange line) seem to be on the increase. https://lh4.googleusercontent.com/-hTjZMvinzvs/TX6DFQRkb_I/AAAAAAAAAOM/RX-LvWZC86o/s1600/Program%2525.jpeg"> Analyzing further the financials for Komen's Research program, I find that from the $75.4M allocated to the Research program, that only $62.7M was spent on actual research awards and grants with the remaining $12.7M spent on Professional Fees expense of $6.3M; Salaries and Benefits of $2.8M; and other Operating expenses of $3.6M. To recap; although the Research program was allocated 19% of total revenue only 16% of total revenue was used to fund actual research! And why the need to spend $6.3M on Professional Fees expense, which is generally fees like accounting, legal, public relations, financial management etc.? 16% to Research is significantly less than the 25% Komen repeatedly claims is used to fund research. And the annual Research program allocation percentage, when compared to total revenue, keeps decreasing!
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: Lee21
Date Posted: Feb 02 2012 at 9:50am
From the NYT:
http://www.nytimes.com/2012/02/02/us/uproar-as-komen-foundation-cuts-money-to-planned-parenthood.html?pagewanted=1&_r=1 - http://www.nytimes.com/2012/02/02/us/uproar-as-komen-foundation-cuts-money-to-planned-parenthood.html?pagewanted=1&_r=1
From the LA times
http://www.latimes.com/health/la-he-planned-parenthood-komen-20120201,0,4104682.story - http://www.latimes.com/health/la-he-planned-parenthood-komen-20120201,0,4104682.story
------------- 12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant 1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Posted By: BamaRachel
Date Posted: Feb 02 2012 at 10:57am
For the past six years a group of friends here in the B'ham area have been raising money for breast cancer research. We initially raised the money for SGK, but after learning of the breakdown of their expenditures, we have for the last few years donated our money to the Breast Cancer Research Foundation where we believe more money goes into research. This year our little group raised over $14,000 by having a "Boil Out Breast Cancer" shrimp boil luncheon. Big success and everyone who came seemed to really enjoy it.
------------- DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Posted By: mainsailset
Date Posted: Feb 02 2012 at 11:45am
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Whew! This thing is really disturbing, here's a comprehensive inside look http://www.theatlantic.com/politics/archive/2012/02/top-susan-g-komen-official-resigned-over-planned-parenthood-cave-in/252405/ - http://www.theatlantic.com/politics/archive/2012/02/top-susan-g-komen-official-resigned-over-planned-parenthood-cave-in/252405/
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: SagePatientAdvocates
Date Posted: Feb 02 2012 at 1:29pm
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Thanks Mainy for your posts...A sad day for Komen and in my view, a stark reminder as to what has happened to our country. Our Supreme Court has enabled various individuals/organizations to give unlimited funds to Super-PACS, often secretly, that I believe greatly influence the Congress/legislation in this country.
http://www.nytimes.com/2012/02/02/us/politics/super-pac-filings-show-power-and-secrecy.html?nl=todaysheadlines&emc=tha2 - http://www.nytimes.com/2012/02/02/us/politics/super-pac-filings-show-power-and-secrecy.html?nl=todaysheadlines&emc=tha2
According to this article Planned Parenthood has already replaced the lost Komen funds. Nevertheless, it would be nice to see Komen reverse itself. I am afraid that is just a dream.
http://www.businessweek.com/news/2012-02-02/planned-parenthood-replaces-lost-komen-grant-in-internet-push.html - http://www.businessweek.com/news/2012-02-02/planned-parenthood-replaces-lost-komen-grant-in-internet-push.html
Another interesting article and what is at the core of all this, to a certain extent,in my opinion-
http://campaignstops.blogs.nytimes.com/2012/02/02/whats-a-republican-feminist-to-do/?nl=opinion&emc=tya2 - http://campaignstops.blogs.nytimes.com/2012/02/02/whats-a-republican-feminist-to-do/?nl=opinion&emc=tya2
I, like Mainy, do not want this thread to disintegrate into a heated political/right-to-life discussion but I think it is sad commentary when an organization feels it has to bow to political pressure to curtail breast cancer services offered to women who could not afford them, otherwise.
warmly,
Steve
p.s. Rachel, I am aware of the excellent work being done by Breast Cancer Research Foundation. At the recent San Antonio Breast Cancer Symposium, Dr. Larry Norton, chief or the breast clinic at Memorial Sloan-Kettering Cancer Center, delivered a lovely remembrance to Evelyn Lauder one of the founder’s of BCRF. I believe your instincts to support them may be correct. I am going to try and learn more.
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: 123Donna
Date Posted: Feb 02 2012 at 3:26pm
Steve,
Correct me if I'm wrong, but I thought I read that Evelyn Lauder was the one behind the pink ribbon or ribbon design for breast cancer.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: BamaRachel
Date Posted: Feb 02 2012 at 3:52pm
Donna, I think I've heard that too and that maybe there's been some dispute over the ribbon. My chemo brain is rather fuzzy right now, but seems like I heard that earlier.
------------- DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Posted By: overwhelmed
Date Posted: Feb 02 2012 at 4:37pm
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Mayor Bloomberg will donate $1 for each $1 Planned Parenthood raises for the next $250,000.
http://cityroom.blogs.nytimes.com/2012/02/02/bloomberg-to-give-250000-to-planned-parenthood/ - http://cityroom.blogs.nytimes.com/2012/02/02/bloomberg-to-give-250000-to-planned-parenthood/
Per Mayor Bloomberg:
“Politics have no place in health care. Breast cancer screening saves lives and hundreds of thousands of women rely on Planned Parenthood for access to care. We should be helping women access that care, not placing barriers in their way.”
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------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: mainsailset
Date Posted: Feb 02 2012 at 5:05pm
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ha you beat me to it! I just saw the Bloomberg article and was bringing it home. Thanks
M
Here's a good cartoon version http://thepoliticalcarnival.net/2012/02/02/photoh-what-can-and-cannot-screen-for-breast-cancer/ - http://thepoliticalcarnival.net/2012/02/02/photoh-what-can-and-cannot-screen-for-breast-cancer/
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Feb 02 2012 at 7:24pm
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Regarding the Pink Ribbon, this is from Wikipedia:
The first known use of a pink ribbon in connection with breast cancer awareness was in the fall of 1991, when the http://en.wikipedia.org/wiki/Susan_G._Komen_Foundation - Susan G. Komen Foundation handed out pink http://en.wikipedia.org/wiki/Ribbon_%28award%29 - ribbons to participants in its New York City race for breast cancer survivors. http://en.wikipedia.org/wiki/Pink_ribbon#cite_note-0 - [1] The pink ribbon was adopted as the official symbol of http://en.wikipedia.org/wiki/National_Breast_Cancer_Awareness_Month - National Breast Cancer Awareness Month the next year, in 1992. http://en.wikipedia.org/wiki/Pink_ribbon#cite_note-Sulik47-1 - [2] The pink ribbon was derived from the popular http://en.wikipedia.org/wiki/Red_ribbon - red ribbon for http://en.wikipedia.org/w/index.php?title=AIDS_awareness&action=edit&redlink=1 - AIDS awareness . http://en.wikipedia.org/wiki/Alexandra_Penney - Alexandra Penney , the editor-in-chief of the women's health magazine http://en.wikipedia.org/wiki/Self_%28magazine%29 - Self , and breast cancer survivor http://en.wikipedia.org/wiki/Evelyn_Lauder - Evelyn Lauder , http://en.wikipedia.org/wiki/Pink_ribbon#cite_note-cnn-2 - [3] the senior corporate vice president at the cosmetics company http://en.wikipedia.org/wiki/Est%C3%A9e_Lauder_Companies - Estée Lauder created a ribbon for the cosmetics giant to distribute in stores in New York City. Estée Lauder and Self initially approached http://en.wikipedia.org/w/index.php?title=Charlotte_Haley&action=edit&redlink=1 - Charlotte Haley , who had began a peach-coloured ribbon campaign to press the http://en.wikipedia.org/wiki/National_Cancer_Institute - National Cancer Institute to increase its budget for cancer prevention research. Haley refused to be part of what she felt was a commercial effort, so Estée Lauder and Self changed the color of their ribbon to pink, to circumvent Haley's efforts to stop them. http://en.wikipedia.org/wiki/Pink_ribbon#cite_note-Barnard-3 - [4] http://en.wikipedia.org/wiki/Pink_ribbon#cite_note-Campbell-4 - [5] http://en.wikipedia.org/wiki/Pink_ribbon - http://en.wikipedia.org/wiki/Pink_ribbon
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: 123Donna
Date Posted: Feb 02 2012 at 7:29pm
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A couple of questions for Komen when they pull $700k in funding to women who might not have access to it without the help of PP.
1. Is it true you spend $1M+ each year "defending your brand" in order to "protect your market share?
2. Is it true many of the SGK top executives make $200K+ (ans some as high as $500K)?
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: 123Donna
Date Posted: Feb 02 2012 at 7:34pm
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Hmm, will we be see more resignations at SGK?
http://www.huffingtonpost.com/2012/02/02/susan-g-komen_n_1250651.html - http://www.huffingtonpost.com/2012/02/02/susan-g-komen_n_1250651.html
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: SagePatientAdvocates
Date Posted: Feb 03 2012 at 3:35am
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http://www.nytimes.com/2012/02/03/us/komen-foundation-urged-to-restore-planned-parenthood-funds.html?_r=1&nl=todaysheadlines&emc=tha2 - http://www.nytimes.com/2012/02/03/us/komen-foundation-urged-to-restore-planned-parenthood-funds.html?_r=1&nl=todaysheadlines&emc=tha2
The outrage is genuine and continues...
I was particularly impressed by the 7 California affiliates who all called for a change.
These are folks who potentially are risking their jobs/careers at Komen doing so. True courage.
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: ds21
Date Posted: Feb 03 2012 at 8:17am
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Unfortunately, this going to politicize fund raising for women's health care broadly.
Interesting about salaries at Komen. If true they are a real scandal.
David
------------- Co-survivor
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Posted By: overwhelmed
Date Posted: Feb 03 2012 at 10:29am
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I agree, David. Planned Parenthoo has seen an increase in fundraising during the past few days by those who want to make a statement and be sure that PP can continue to offer screenings for those who rely on them. I bet it is likely that Komen has also seen a tremendous amount of support for their decision because it represents because it represents the agenda of many who are pro life.
What I will do in protest is to never walk in Komen event. Perhaps if there are fewer pink survivor shirts, in the walk they will get the message. What I feel is sad is that women's health has become increasingly political. You can be pro life and pro breast screening at the same time. I heard yesterday that abortion services are actually only about 2 or 3% of what PP does. Now, some will see that as 2 or 3% too much. We each have personal feelings about this very hot button issue. But, so much of what PP does has nothing to do with abortion and so much to do with providing health services to poor women. Plus, the money given to PP by Komen went to cover exactly what Komen is all about, education, screening and early detection. I still can't imagine how Komen can feel good about pulling funding for services to very women who need it most.
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------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: mainsailset
Date Posted: Feb 03 2012 at 10:50am
In a nutshell, the hands down best summary I've seen was on Rachel Maddow last night. Here's the link, http://www.msnbc.msn.com/id/26315908/#46246644 - http://www.msnbc.msn.com/id/26315908/#46246644 it is difficult to watch but certainly gives a good understanding of the history and how we got here.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Feb 03 2012 at 11:03am
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Good link Mainy, very informative.
Andrea Mitchell interviews Ms. Brinker last night. See how uncomfortable she is during the interview. Can't buy the new SGK "metric spin".
http://video.msnbc.msn.com/mitchell-reports/46241089 - http://video.msnbc.msn.com/mitchell-reports/46241089
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: SagePatientAdvocates
Date Posted: Feb 03 2012 at 11:05am
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Thanks, Mainy.. warmly, Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: mainsailset
Date Posted: Feb 03 2012 at 11:27am
We're back in business!!! Breaking news is that Komen is reversing their decision.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Feb 03 2012 at 11:30am
Yeah!!!! < ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">
Let's see how this plays out and if they keep their word.
The official statement issued was that they will "honor existing grants" (which only means they won't demand the already granted money back) and that PP is free to apply again in the future - to which Handel already stated publicly yesterday that even if they apply again, they are unlikely to give them anymore grants due to much of PP's mammography services being referrals to off-site radiology labs and that they are, quote: "moving away from 'pass-through' services." [this is from the De-Fund Komen FB page]
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: SagePatientAdvocates
Date Posted: Feb 03 2012 at 11:46am
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Komen just reversed their decision and will support Planned Parenthood.
http://www.nytimes.com/reuters/2012/02/03/us/politics/03reuters-usa-healthcare-komen.html?_r=1&hp - http://www.nytimes.com/reuters/2012/02/03/us/politics/03reuters-usa-healthcare-komen.html?_r=1&hp
Mainy, didn’t mean to step on your news..hadn’t seen your msg on board.
all the best,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: Charlene
Date Posted: Feb 03 2012 at 12:09pm
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So happy to see that Komen backed down. But, I still think they continue to damage their reputation and should be watched carefully!
Charlene
------------- DX 3/10 @59 ILC/TNBC Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED
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Posted By: 123Donna
Date Posted: Feb 03 2012 at 12:27pm
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Let's be hopeful that SGK will follow through and that this is not a PR move.
http://studentactivism.net/2012/02/03/komen-statement-on-planned-parenthood-is-a-pr-move-not-a-policy-reversal/ - http://studentactivism.net/2012/02/03/komen-statement-on-planned-parenthood-is-a-pr-move-not-a-policy-reversal/
Komen Statement on Planned Parenthood is a PR Move, Not A Policy ReversalThe Susan G. Komen Foundation released a http://thescoopblog.dallasnews.com/archives/2012/02/komen-apologizes-for-recent-de.html - statement moments ago that many are greeting as a reversal of their decision to cut funding to Planned Parenthood. On Twitter, the Breaking News feed called it a “pledge to continue funding Planned Parenthood,” while Glenn Greenwald called it “an amazing, Internet-driven victory.” But it’s not. The new statement does not pledge Komen to reverse its funding decision, and it does not promise Planned Parenthood any new funding. Let’s look at the relevant passage (emphasis mine): “We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligibility to apply for future grants, while maintaining the ability of our affiliates to make funding decisions that meet the needs of their communities.” Komen had never intended to renege on its existing grant commitments to Planned Parenthood, as PP themselves noted in http://www.plannedparenthood.org/about-us/newsroom/press-releases/alarmed-saddened-komen-foundation-succumbing-political-pressure-planned-parenthood-launches-fun-38629.htm - their press release announcing the break between the two organizations (again, emphasis mine): “In the last few weeks, the Komen Foundation has begun notifying local Planned Parenthood programs that their breast cancer initiatives will not be eligible for new grants (beyond existing agreements or plans).“ Komen’s statement that Planned Parenthood will be “eligible” for new grants is a new development, but it commits Komen to nothing. There’s no reversal of the funding cutoff here, and no promise to reinstate Planned Parenthood funding. This isn’t a victory. Not yet.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: SagePatientAdvocates
Date Posted: Feb 03 2012 at 12:52pm
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Dear Donna,
I just received this from Komen and I think we need to take them at their word regarding funding and changing their policies. It is inconceivable to me that, after this announcement, they do not fund Planned Parenthood, now, or in the future.
warmly,
Steve
February 3, 2012 For Immediate Release Statement from Susan G. Komen Board of Directors and Founder and CEO Nancy G. Brinker We want to apologize to the American public for recent decisions that cast doubt upon our commitment to our mission of saving women’s lives. The events of this week have been deeply unsettling for our supporters, partners and friends and all of us at Susan G. Komen. We have been distressed at the presumption that the changes made to our funding criteria were done for political reasons or to specifically penalize Planned Parenthood. They were not. Our original desire was to fulfill our fiduciary duty to our donors by not funding grant applications made by organizations under investigation. We will amend the criteria to make clear that disqualifying investigations must be criminal and conclusive in nature and not political. That is what is right and fair. Our only goal for our granting process is to support women and families in the fight against breast cancer. Amending our criteria will ensure that politics has no place in our grant process. We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligibility to apply for future grants, while maintaining the ability of our affiliates to make funding decisions that meet the needs of their communities. It is our hope and we believe it is time for everyone involved to pause, slow down and reflect on how grants can most effectively and directly be administered without controversies that hurt the cause of women. We urge everyone who has participated in this conversation across the country over the last few days to help us move past this issue. We do not want our mission marred or affected by politics – anyone’s politics. Starting this afternoon, we will have calls with our network and key supporters to refocus our attention on our mission and get back to doing our work. We ask for the public’s understanding and patience as we gather our Komen affiliates from around the country to determine how to move forward in the best interests of the women and people we serve. We extend our deepest thanks for the outpouring of support we have received from so many in the past few days and we sincerely hope that these changes will be welcomed by those who have expressed their concern.
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: cheeks
Date Posted: Feb 03 2012 at 1:07pm
Glad they have reconsidered 
Blair
------------- Lump found 11/08 DX: 2/09 @52 TNBC L. Mast. 3/26/09, SN-, BRCA-, 4.5 cm (post surgical)T2NOMO Chemo: 4/09-10/09 Taxol x 12, A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Posted By: overwhelmed
Date Posted: Feb 03 2012 at 2:32pm
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I am glad to hear they did the right thing. I think a lot of voices from thousands of women made them take a look at this.
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------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: 123Donna
Date Posted: Feb 03 2012 at 2:35pm
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Steve,
I sure hope they will do the right thing. I hope so. My new motto is from DeNiro's famous line in Meet the Parents, "I'm watching you [Komen]".
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Feb 03 2012 at 3:02pm
For those of us just simply hoping that our fellow cancer families get the care we all need to have I'm greatly heartened to see that several organizations, vendors, celebrities and everyday caring people stepped up and gave to Planned Parenthood...among them Live Strong. May their kindness be matched by Komen. hint Komen, now would be a good time to UP your contributions to PP, just sayin.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: overwhelmed
Date Posted: Feb 03 2012 at 4:36pm
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I just read that Planned Parenthood has a pending grant application for 2013. The grant still hasn't been approved. I think for Komen to show that they really mean what they say, they need to approve that grant ASAP. Like Donna said, we need to be watching to see if their actions match their apology.
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------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: mainsailset
Date Posted: Feb 03 2012 at 5:28pm
For Komen, the outrage did not cease after the decision. Many many calls are coming forth for the entire Board to resign over this and many similar groups decry that this now puts a pall on their reputations to stay clear of politial sway http://vitals.msnbc.msn.com/_news/2012/02/03/10311538-might-be-too-little-too-late-for-komen-bioethicist-says - http://vitals.msnbc.msn.com/_news/2012/02/03/10311538-might-be-too-little-too-late-for-komen-bioethicist-says
Trust is a precious thing.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: SagePatientAdvocates
Date Posted: Feb 04 2012 at 9:18am
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More today in the NY Times-
http://www.nytimes.com/2012/02/04/health/policy/komen-breast-cancer-group-reverses-decision-that-cut-off-planned-parenthood.html?_r=1&nl=todaysheadlines&emc=tha2 - http://www.nytimes.com/2012/02/04/health/policy/komen-breast-cancer-group-reverses-decision-that-cut-off-planned-parenthood.html?_r=1&nl=todaysheadlines&emc=tha2
A Komen board member was quoted as the last paragraph-
“Is it possible for a woman’s health organization to stay out of the abortion issue and help all women?” asked Mr. Raffaelli, the Komen board member. “I don’t know the answer to that yet. What we were doing before was angering the right-to-life crowd. Then, with our decision in December, we upset the pro-choice crowd. And now we’re going to make the right-to-life crowd mad all over again. How do we stop doing that?”
This quote seems to fly in the face of the apology letter from Komen’s board and Nancy Brinker, personally, when they stated the decision was not political. Clearly, in my opinion, and by Mr. Raffaelli’s statement it was.
Maybe the answer to Mr. Raffaelli's question is “don’t worry about making one political group or another happy. Make the women you are helping with your breast cancer screening programs happy as you have in the past. Women who could not afford various screenings and some cancers found and some lives saved. Be loyal to the women you are mandated to help." In my opinion that is Komen’s mission and they should remain true to that mission despite the fallout politically. That was the message delivered to the organization, in the last few days, by millions of supporters and hopefully Komen has listened and will remember. As long as Ms. Handel remains in an important position within the organization, and her personal biases heeded, there are possibilities of more poor decisions but I still believe Komen has listened to the outcry and that funding for breast cancer screening through Planned Parenthood will be safe. The organization has apologized for this very sad chapter, and hopefully can get on with its varied worthwhile missions-to educate, to facilitate screenings and other services for the underserved, to fund important research to better the current treatment for breast cancer, and hopefully to help find a cure for breast cancer.
warmly,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: ds21
Date Posted: Feb 04 2012 at 9:45am
One outcome of this episode is a much broader appreciation for the mission of Planned Parenthood as fundamentally women's health. If you just listened to the TV news before this, the impression was that Planned Parenthood was mainly an abortion clinic, but clearly their mission is much broader. On the positive side, Planned Parenthood apparently raised $3M in 48 hours. Pretty sure that this is an all time record for them.
It is going to take a long time for Komen to repair the damage they did to their brand. As Gail Collins in the NYT points out, this may not be entirely a bad thing. Their emphasis on mammogram screening at the expense of many other approaches is narrow, and trying to capture "for the cure" and the color pink as exclusive trademarks belonging to the SGKF seems excessive. There are many other highly meritorious organizations out there that deserve support.
Can we keep politics out of health care? Politics is the price you pay for success. If health care accounted for 0.1% of the GNP, maybe it could fly below the radar, but as a trillion dollar enterprise accounting for a third of the federal budget, no way. The goal is to keep the politics rational and based on science. Good and bad news for the SGKF is that there are now a million people out there saying "We'll be watching you."
David
------------- Co-survivor
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Posted By: overwhelmed
Date Posted: Feb 04 2012 at 10:01am
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Steve,
That is so well said. The outrage from so many was a result of Komen politicizing women's health. I am with you, they have no business being concerned about one political group or another. They need to consider these grants and give them based on need and how it furthers their mission of early detection. I would imagine the outcry they heard came from women who are both pro-life and pro-choice. My feeling is that they heard from survivors and their families who know the reality of the disease, and who realize that each of us is better off the sooner it is found. For many women, finding it early is the difference between losing one or both breasts or a lumpectomy and radiation. It is the difference between avoiding chemo and having chemo. Sadly, for too many it is the difference between life and death. Those of us with TNBC know that time is so important.
I have been so fortunate. I have great insurance. I am thankful to my husband's job for the insurance I have. Yet, I get no credit for having that insurance. There are so many people not as fortunate, and those are the very women Planned Parent and other organizations help. They help poor women and minorities or those without insurance. They also help women who don't have insurance. Overwhelmingly, what they do has nothing to do with abortion.
I was taken back yesterday when my 14 year old daughter showed me something written on her FB wall. A friend had written that Komen was wrong to reverse their decision and that the women could just get their exams somewhere else. There was no need for anyone to go to a place that gives abortions. It bothered me because I am sure it was her parents talking, not her. It shows concern for life of a baby, on the one hand, which I understand and respect, but complete disregard for the life of a women with breast cancer who needs treatment sooner rather than later. We already know that women who are poor are more likely to die of this disease. So, how is the position "let them find treatment elsewhere" a pro-life position. I am sure they don't see it that way, but that is the reality. I wish these groups would educate themselves on the reality and not just listen to anti-PP sentiment that is out there. Politicians, radio hosts, and TV commentators have turned Planned Parenthood into a boogey man, without taking into account that much of what they do serves a vital need for a population that has few options.
These statements show that Komen has become more political as they try to keep both sides happy. They have hired a woman who is pro-life and made the defunding of PP a campaign promise in her GA run for govenor. What she and Raffaelli don't get is that the voices they heard weren't simply pro-choice voices. There were many women who identify themselves as pro-life who were equally outraged that Komen is defunding an organization that is vital in early detection for women who may have no other option for getting an exam. It makes me wonder if they had hoped to do this under the radar, but were caught going against their own mission for political purposes. We can only watch them to be sure that going forward they stop pandering to political groups.
< id="_npwlo" ="applicationpwlo" height="0">
------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: 123Donna
Date Posted: Feb 04 2012 at 11:49am
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Interesting -< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">
In addition to pulling funds from Planned Parenthood, http://www.care2.com/causes?s=komen - The Susan G. Komen Foundation also decided to http://www.lifenews.com/2012/02/01/komen-also-stops-funding-embryonic-stem-cell-research-centers/ - stop funding embryonic stem cell research centers , making it fully transparent the organization has evolved from non-political non-profit to a partisan advocacy organization. That means the loss of $3.75 million to the Johns Hopkins University School of Medicine, $4.5 million to the University of Kansas Medical Center, $1 million to the U.S. National Cancer Institute, $1 million to the Society for Women’s Health Research, and $600,000 to Yale University. That’s a loss of nearly $12 million dollars in research money to eradicate breast cancer this year alone. This is a new position for the organization which had previously supported all sorts of scientific research targeted at finding a cure for breast cancer and saving women’s lives. Its new position is that the organization will categorically no longer support any embryonic stem cell research. Read more: http://www.care2.com/causes/susan-g-komen-foundation-also-stops-funding-embryonic-stem-cell-research.html#ixzz1lQsDJ1xI - http://www.care2.com/causes/susan-g-komen-foundation-also-stops-funding-embryonic-stem-cell-research.html#ixzz1lQsDJ1xI
AUSTIN, TX, Feb 03, 2012 (MARKETWIRE via COMTEX) -- Today, LIVESTRONG(R) is joining Mayor Michael Bloomberg and the philanthropic community in their efforts to preserve access to cancer screening for women throughout the United States by donating $100,000 to Planned Parenthood. Lance Armstrong, cancer survivor, champion cyclist and LIVESTRONG founder and chairman, issued the following statement: "For 15 years, the Lance Armstrong Foundation has served people and families affected by cancer, especially those in underserved communities. We join Mayor Bloomberg and our partners in the philanthropic community today in their efforts to preserve access to cancer screening for women throughout the U.S. The Lance Armstrong Foundation will add an additional $100,000 to Mayor Bloomberg's matching challenge for Planned Parenthood's cancer services fund. "As Dr. King said, 'there is no greater injustice than inequality in health care.' Cancer, on the other hand, respects no boundaries. It's a big, vicious disease that has no regard for race, gender, income or which side of the aisle we call home. Its survivors -- 12 million of us throughout the U.S. -- deserve every bit of support we can muster. The Lance Armstrong Foundation will continue working to expand access to healthcare as we always have." http://www.marketwatch.com/story/livestrongr-joins-mayor-michael-bloomberg-and-philanthropic-partners-in-their-efforts-to-preserve-access-to-cancer-screening-for-women-with-a-100000-donation-t - http://www.marketwatch.com/story/livestrongr-joins-mayor-michael-bloomberg-and-philanthropic-partners-in-their-efforts-to-preserve-access-to-cancer-screening-for-women-with-a-100000-donation-to-planned-parenthood-2012-02-03
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Feb 04 2012 at 12:47pm
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Perhaps people don't want to hear this but in the end, Roe vs Wade is the law of the land. I stand with most Americans who shudder at every aspect of abortion, but I cannot in good faith insert my beliefs that stand afar from the imminent threat a woman seeking an abortion, for her own reasons, must submit herself to. I have not known her fear, her strength or her path, but I can always understand the spirit with which others try and help their fellow travellers. Helping people in need is the greatest gift and necessity of all our lives.
The war on women, the onslaught for the last year of trying to shut down Planned Parenthood is shameful. I've been following this closely for over a year and have been horrified at the lengths this war has gone, but I have to say that when I realized Komen was going to cut funding to not just PP but to stem cell research (take a look at all the stem cell research is accomplishing for cancer in last several years) I realized they have been compromised.
I swear I can hear cancer laughing at this pettiness.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Feb 04 2012 at 4:55pm
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Mainy,
I read that Komen cut stem cell research funding in back in November. We didn't take notice because the research institutes, like John Hopkins, were the ones affected. Now with the onslaught against PP, this secret has been uncovered, along with many of their other practices (eg., litigation against other charities). I think the proverbial cat is out of the bag and they will no longer be able to secretly feed their political agenda. At least I hope so. They may just get better at covering it up. My friend made the best comment to me. Since Komen basically acts as a "middleman" funding charity dollars to other organizations, she said she's just going to give her donations directly to those organizations and will no longer be funding Komen. I have to agree.
IMHO - I hope charities can learn to stay out of politics. I think if they cross that line, then maybe their non-profit status should change. With the current situation at SGK, it looks like politics is embedded in the organization and goes all the way to the very top.
http://thinkprogress.org/politics/2012/02/03/418797/exclusive-ari-fleischer-komen-planned-parenthood/?mobile=nc - http://thinkprogress.org/politics/2012/02/03/418797/exclusive-ari-fleischer-komen-planned-parenthood/?mobile=nc
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: Charlene
Date Posted: Feb 04 2012 at 5:24pm
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Mainy and Donna,
I agree with all you have said. I hope that there will be increased scrutiny of Komen and their practices. Today the Atlanta Journal Constitution quoted someone saying that he was disappointed that Komen reversed their decision "after getting brow-beaten by the abortion-rights crowd." NO--it was those of us who believe in all women having access to health care. I will also give donations directly to those I wish to support and not to Komen.
Charlene
------------- DX 3/10 @59 ILC/TNBC Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED
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Posted By: 123Donna
Date Posted: Feb 04 2012 at 6:56pm
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More charity money spent on PR giant firm Ogilvy.
http://adage.com/article/agency-news/ogilvy-working-susan-g-komen-cure-pr-crisis/232526/ - http://adage.com/article/agency-news/ogilvy-working-susan-g-komen-cure-pr-crisis/232526/
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: ds21
Date Posted: Feb 04 2012 at 8:07pm
SGKF hired Olgivy in August. Obviously the PR firm did not do a great job of advising them on the potential repercussions of their decision. The sad part of all of this is that up to this point SGKF was a well run, highly productive organization funding lots of good programs and got top marks for charitable organizations.
David
------------- Co-survivor
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Posted By: 123Donna
Date Posted: Feb 04 2012 at 8:19pm
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Then I guess Ad Agency's Feb 3, 2012 article isn't correct? If they fired them then why do they say they are now handling this PR crisis?
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: 123Donna
Date Posted: Feb 04 2012 at 9:41pm
http://www.washingtonpost.com/national/health-science/susan-g-komen-foundation-takes-steps-to-rebuild-trust-after-pr-fiasco/2012/02/04/gIQAdljRqQ_story.html - http://www.washingtonpost.com/national/health-science/susan-g-komen-foundation-takes-steps-to-rebuild-trust-after-pr-fiasco/2012/02/04/gIQAdljRqQ_story.html Now Komen executives are faced with the task of http://www.washingtonpost.com/blogs/ezra-klein/post/irrevocable-damage-24-hours-in-the-life-of-a-komen-executive/2012/02/04/gIQAKPLqpQ_blog.html?tid=pm_business_pop - restoring credibility to one of the strongest brands in the nonprofit world. Brendan Daly, an executive vice president at Ogilvy public relations, confirmed that Komen had sought Ogilvy’s help this week. Brinker told affiliates Saturday that they would also be getting help on crisis communications from Ari Fleischer, a former White House press secretary in the George W. Bush administration. Neither consultant was involved in the funding decision. “People may now question the role political ideology plays in their decision-making, and that didn’t enter into people’s minds in the past,” said Lee Lynch, who heads health-care advocacy and does crisis management for Edelman Communications. “So they’re going to have to deal with that perception.” Some corporate sponsors are reviewing their partnerships. Komen affiliates have already lost donations and Race for the Cure sponsorships. in New York, the Tocqueville Restaurant e-mailed a “note of concern” Saturday to patrons, notifying them that it was no longer donating proceeds to Komen from a special dinner Tuesday because of “the recent events.” Honest Tea, the Bethesda-based company that began partnering with Komen two years ago, is pausing to rethink its options. It donated $100,000 to Komen last year. While the amount is small compared with donations from other large corporations, Komen is one of Honest Tea’s largest partnerships with a nonprofit group, said company president Seth Goldman.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: 123Donna
Date Posted: Feb 04 2012 at 10:08pm
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All I can say is really? Where have I been? I must have had a blind eye on Komen, but no more.
http://www.discountgunsales.com/walther-p-22-hope-edition-34-pr-5575.html - http://www.discountgunsales.com/walther-p-22-hope-edition-34-pr-5575.html | | | ***Due to overwhelming popularity, we are no longer taking backorders on this item. We thank everyone for the support. *** In recognition of Breast Cancer Awareness Month, Discount Gun Sales is proud to team up with the Susan G. Komen Foundation to offer the Walther P-22 Hope Edition. A portion of the proceeds for every P-22 Hope Edition sold will be donated to the Seattle Branch of the Susan G. Komen Foundation. |
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------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Feb 05 2012 at 10:48am
Donna, good job on keeping the articles comin home. We need to know all this. I did laugh on the one article that said Ari Fleisher...nothing to do with this decision. Yet Fleisher interviewed the applicants for Karen's job and was said to heavily question the participants' view of PP and eventually recommended Karen who had publicly advocated against PP and who was at the forefront of their decision. And gee, haven't seen yet that she's lost her job, maybe I'm behind on my news but I haven't seen that announcement. Until I do I'm not convinced SGK is going to match their actions to their carefully chosen words.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Charlene
Date Posted: Feb 05 2012 at 11:04am
That's one thing it would take to satisfy me--getting rid of Karen Handel! Just a first step, though.
------------- DX 3/10 @59 ILC/TNBC Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED
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Posted By: mainsailset
Date Posted: Feb 05 2012 at 12:28pm
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Here's another post http://www.dailykos.com/story/2012/02/05/1061237/-Komens-hypocrisy:-Let-us-count-the - http://www.dailykos.com/story/2012/02/05/1061237/-Komens-hypocrisy:-Let-us-count-the ways?via=blog_1#comments Kinda pulls things together.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Feb 05 2012 at 2:13pm
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http://www.forbes.com/sites/daviatemin/2012/02/03/how-to-destroy-a-reputation-less-than-a-week-komen-and-planned-parenthood/ - http://www.forbes.com/sites/daviatemin/2012/02/03/how-to-destroy-a-reputation-less-than-a-week-komen-and-planned-parenthood/ How To Destroy A Reputation In Less Than A Week: Komen And Planned Parenthood http://www.forbes.com/politics/ - Politics and women’s health issues have always made strange bedfellows, but never more than in the past week. And never more than in an election year. In one of the more bizarre series of actions I have ever witnessed as a crisis manager, Susan G. Komen for the Cure completely compromised its sterling reputation by first caving in to one set of political pressures, and then another. And in the process, they left us all wondering who these people really are, and what they stand for.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Feb 05 2012 at 3:08pm
It's being reported that Komen's CEO, Nancy Brinker is paid $5 million a year. I don't believe that. But if it is true, that's a whole lot of research grant funding that is already being defunded, not to mention scans, infusions and of course hope.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: SagePatientAdvocates
Date Posted: Feb 05 2012 at 3:34pm
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Well you guys may throw stones at me but I feel I need to share with you the following-
First of all, you have been ‘preaching to the choir’ about the mistake Komen made. I am still angry about it. My first reaction was to quit my activities with the organization. I am involved in the "Komen Advocates in Science(AIS)” program and I feel I have learned a lot and met some wonderful fellow patient advocates. I have also been extremely impressed by the Komen organization’s efforts, particularly Kendall Bergman, to make the AIS an excellent resource. Nevertheless, I was really furious at what they did.
On a more immediate, personal basis, I had spent a lot of time doing some grant review work for the local (Los Angeles) Komen affiliate and the final grant review meeting was yesterday. Again, I almost called them to tell them that I was withdrawing from the meeting but in thinking about it I did not think that would be fair to my fellow reviewers or to the Komen organization or to the organizations who have applied for grants. The grant money overwhelmingly goes to women who are underserved in the Los Angeles area and many of them have no or little insurance and would not be able to get screening with the help of some of the organizations that Komen would fund. Also other services such as education, translation services and patient navigation are supported.
I am glad I decided to go to the meeting. The Komen employees (who did an excellent job on the grant review program) running the meeting explained to us what the L.A. affiliate did in response to the ill-advised PP decision. I have written about this before but I was very impressed about their commitment to helping women with breast cancer. It is one thing to complain about Komen’s position when you are not at personal risk of losing your job; it is quite another to speak out against your employer as all the California Komen affiliates did, possibly damaging individual careers. I am very, very proud of them and the sincerity they expressed was authentic, in my opinion.
We voted and depending on board approval and funds being available some very worthwhile programs I believe will be funded. I can’t go into any specifics because I am not allowed to speak about any individual grant, but in my view, Komen through these grants are helping various organizations in an important way.
Finally, over the years I have met various scientists who were the recipients of various Komen grants in amounts that were very significant and that enabled then to continue important research. Some of those scientists have gone on to help our TNBC community in important ways. Such a scientist is Dr. Ana Maria Gonzalez-Angulo at MD Anderson Cancer Center in Houston. She received support early in her career from Komen that has enabled her to do research on TNBC as well as other breast cancers. You can scroll down to the bottom of her CV to see some of the support and her list of publication include many on TNBC.
http://faculty.mdanderson.org/Ana_Gonzalez-Angulo/Default.asp?SNID=1481996111
By the way The Breast Cancer Research Foundation also supports Dr. Gonzalez’ work-
http://bcrfcure.org/action_grantees_gonzalezangulo.html
In any event, I do not condone what the Komen organization did regarding PP but I feel that they have contributed in many important ways towards supporting primary research in breast cancer and also in many support services.
I, for one, think we have better things to do to support our beloved TNBC family than to continue to bash Komen. No organization is perfect and Komen has acknowledged in recent days that they have made a huge mistake. Their reputation has been severely tarnished and they and we will pay a price for that. And when I say “we” I mean that if Komen is less successful in its fund raising that will mean less for research and support grants, in general.
From what I have seen there is no perfect in this world, including breast cancer advocacy groups. Komen has apologized and I would imagine they are still not perfect. But they have apologized and are still doing good work. Let’s, please, try our best to move on.
I think our mission is to support and give some guidance to the marvelous women in our TNBC family. Just as political decisions should not have been a factor in a funding decision I don’t think continued Komen bashing does our forum any good and takes important energy away from our mission.
with all due respect to those who have written negatively about what has gone on recently I am saying goodbye to this thread and will not post on it again. I don’t have the energy to do my advocacy work and participate in these negative discussions...Sorry, if I have disappointed some of you, who I respect and love dearly.
warmly,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: 123Donna
Date Posted: Feb 05 2012 at 5:07pm
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< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0"> Steve,
You are a dear friend and I respect and admire your support and work for our community. I understand you not wanting this to turn into Komen bashing. I personally believe the truth about an organization is good to know so that we as consumers can make our best decisions for our charity dollars. I saw their latest Form 8453 IRS filing and glad to see where some of the research dollars went. A large grant went to Washington University in St. Louis and I'm glad to see it. Wash U does good work and very involved with stem cell research and the genome project. I will try not to bash anyone, but also believe in full public disclosure.
So personally, I think my money will go to organizations that are actually doing the research, screening, etc. than to an organization that will pull in the money, use part of it for administrative purposes, then decide where the dollars should be spent. If I want my money to go to research, then I'll send it to Washington University/Siteman Cancer Center, MD Anderson, John Hopkins or any other organization worthy of my hard earned dollars. If I want it to go to for screening, then it will go to Planned Parenthood. Like I've done in the past, I'll send it directly to TNBC foundation. I'm not bashing SGK, just saying that I should better oversee where my money goes than leaving it to the hands of others. I think what we've learned in the past week (or at least what I've learned) is that blind trust is a dangerous thing. IMHO.
Mainy,
I found this quote: Brinker is currently CEO of the organization. http://ww5.komen.org/uploadedFiles/Content/AboutUs/Financial/KOMEN%20PARENT%20PDC%20wout%20PW.pdf - An IRS filing shows that she received a salary of $417,171 from April 2010 to March 2011; since Komen's inception, Brinker has raised billions to prevent and battle the disease.
http://www.thedailybeast.com/articles/2012/02/05/komen-for-the-cure-how-the-group-s-founder-courted-controversy.html - http://www.thedailybeast.com/articles/2012/02/05/komen-for-the-cure-how-the-group-s-founder-courted-controversy.html
http://ww5.komen.org/uploadedFiles/Content/AboutUs/Financial/KOMEN%20PARENT%20PDC%20wout%20PW.pdf - http://ww5.komen.org/uploadedFiles/Content/AboutUs/Financial/KOMEN%20PARENT%20PDC%20wout%20PW.pdf
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: overwhelmed
Date Posted: Feb 05 2012 at 5:38pm
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Steve, It's good to hear what you have experienced firsthand. From what I have read, many involved with Komen were opposed to the Planned Parenthood decision. Perhaps the decision came from hiring one person who had a political agenda against Planned Parenthood. Komen found out quickly that politicizing women's health was the wrong thing to do. I do think they have and done and will continue to do so much for breast cancer. But, what we have come to know is just how determined some people are to destroy Planned Parenthood, despite that much of what they do for women who are under-served or uninsured. I pay attention to the news (despite not watching any of the cable news networks), and I had heard plenty over the last year about the assault on Planned Parenthood. Like Mainy, I shudder at the thought of abortion. But, I also know that it is a very small part of what PP does. Wiping them out would harm poor women, and that isn't right. So, what has come of this for many is a greater awareness of what Planned Parenthood does. I knew they weren't just a place where women got abortions. I knew they provided health services to women in need. I will pay attention as politicians continue their assault on the organization. I am tired of seeing the politicization of so much that doesn't belong in politics.
Thank you so much for all of the work you do. You are a God send for so many.
Lori.
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------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: mainsailset
Date Posted: Feb 05 2012 at 6:50pm
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Steve, I think after reading your post that this situation is even more heartbreaking because you underscore that a great many individuals as well as individual affiliates have passionately worked for the betterment of cancer research and patient care. We should never set aside recognition of all the good works that have continued throughout the 30 year Komen tenure.
That said, after reading this article, particularly after the 'fold', http://www.dailykos.com/story/2012/02/05/1061504/-The-Komen-Foundations-curious-relationship-with-the-science-of-cancer - http://www.dailykos.com/story/2012/02/05/1061504/-The-Komen-Foundations-curious-relationship-with-the-science-of-cancer prevention?showAll=yes&via=blog_1 I have come to the conclusion that the powers that be at Komen have lost their way. To read the story about their support of KFC (for criminy sake!) and declaring on their website that BPA has not been linked to cancer...well, read the article...all translated succinctly into corporatism is beyond my powers of language.
I also found the article's discussion on what breast cancer has come to be perceived as in our society disheartening. We need to keep discussion this, it is important that Komen's decision last week become a beacon of how we can fix things.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: Lillie
Date Posted: Feb 05 2012 at 9:36pm
Breast Cancer has been trivialized down to bumper stickers and well orchestrated TV insurance commercials.
One day last week a graying, 60ish man, sped by me in his 'convertible' with the top down. On his bumper was a sizeable sticker with the large 'pink ribbon', and the wording "I Love Ta Ta's, Lets Save The TA TA's". Shame on me, I had the impulse to Run Him Over... God Forgive me.
Every so often I catch a TV commercial with a very attractive, composed woman talking about XYZ insurance company. She had late stage breast cancer and went for 26 months with no insurance, worrying about the cancer recurring. She now has XYZ insurance and her worries are over... HOG WASH. She should be portrayed with dark circles under her eyes and her hair in total disarray.
I sense the "attitude of normalcy" from my friends, family and acquaintances when breast cancer is mentioned, or even worse when someone they know is striken with the disease. It has become too trivialized.
YES! Way too many 'warm fuzzies' have been created by the 'pink bow' and pink everything else under the sun mentality.
Just venting...
God Bless,
Lillie
------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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Posted By: overwhelmed
Date Posted: Feb 05 2012 at 9:46pm
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Lillie, I agree with you. I really dislike the Save the TaTa's campaign. What does that organization even do other than make money off breast cancer?
Lori
PS I hope you are doing okay and that your sister-in-law is handling chemo as well as she can. You are all in my thoughts and prayers.
< id="_npwlo" ="applicationpwlo" height="0">
------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Posted By: 123Donna
Date Posted: Feb 05 2012 at 10:14pm
< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">
mainsailset wrote:
That said, after reading this article, particularly after the 'fold', http://www.dailykos.com/story/2012/02/05/1061504/-The-Komen-Foundations-curious-relationship-with-the-science-of-cancer - http://www.dailykos.com/story/2012/02/05/1061504/-The-Komen-Foundations-curious-relationship-with-the-science-of-cancer prevention?showAll=yes&via=blog_1 I have come to the conclusion that the powers that be at Komen have lost their way. To read the story about their support of KFC (for criminy sake!) and declaring on their website that BPA has not been linked to cancer...well, read the article...all translated succinctly into corporatism is beyond my powers of language.
I also found the article's discussion on what breast cancer has come to be perceived as in our society disheartening. We need to keep discussion this, it is important that Komen's decision last week become a beacon of how we can fix things. |
Mainy,
Just read the link and I can't believe some would ignore science over corporate donations. Hundreds of studies linking BPA to breast cancer but SGK claiming there is no link? My son did a paper on BPA and he knows more than SGK. He refuses to eat most anything from canned goods. So sad how money triumphs over science.
Donna
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: Wade
Date Posted: Feb 05 2012 at 10:55pm
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Lillie,
I have to tell you I feel the same way about those "Save the TaTas" stickers. Does anyone really think that this slogan is helpful to anyone? It sounds like something thought up by a 13 year old boy.
Wade
------------- Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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Posted By: mainsailset
Date Posted: Feb 06 2012 at 10:56am
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As I think back, all the way to yesterday, of the many members who write that they appreciate a site such as this where they can be in a community that 'gets it'. How even loved ones and life long friends may assume that bc is treatable successfully every time, that side effects are just that and nothing life impairing...
And now I'm beginnning 'get it' myself; that for society at large bc has become a series of pink ribbons. How can that be? How can all these best intentions behind the pink ribbons have led us to Lillie's experience with the TaTa's. Is this what bc research and care have become? It horrifies me.
Thanks to great strategic advertising the pink seems to have a large persona than bc itself and so the battle we saw wage last week became about Komen rather than where it needs to seat itself and that is the battle against cancer.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: SagePatientAdvocates
Date Posted: Feb 07 2012 at 11:59am
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Well, after promising not to post..here I am, again
But I wanted to pass along the following with pleasure-
Statement from Susan G. Komen Founder and CEO Nancy G. Brinker "Susan G. Komen for the Cure’s mission is the same today as it was the day of its founding: to find a cure and eradicate breast cancer. "We owe no less to our partners, supporters and, above all, the millions of people who have been and continue to be impacted by this life-threatening disease. We have made mistakes in how we have handled recent decisions and take full accountability for what has resulted, but we cannot take our eye off the ball when it comes to our mission. To do this effectively, we must learn from what we've done right, what we've done wrong and achieve our goal for the millions of women who rely on us. The stakes are simply too high and providing hope for a cure must drive our efforts. "Today I accepted the resignation of Karen Handel, who has served as Senior Vice President for Policy since April 2011. I haveknown Karen for many years, and we both share a common commitment to our organization's lifelong mission, which must always remain our sole focus. I wish her the best in future endeavors.”
..........
warmly,
Steve
------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Posted By: cheeks
Date Posted: Feb 07 2012 at 12:33pm
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Steve,
This discussion could be endless and include a lot of things. Thank you for posting the article.
Blair
------------- Lump found 11/08 DX: 2/09 @52 TNBC L. Mast. 3/26/09, SN-, BRCA-, 4.5 cm (post surgical)T2NOMO Chemo: 4/09-10/09 Taxol x 12, A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Posted By: kirby
Date Posted: Feb 08 2012 at 2:32am
such great news
------------- kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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Posted By: 123Donna
Date Posted: Feb 08 2012 at 8:53am
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Maybe what we'll get out of all of this is for more money going to find a cure.
http://www.latimes.com/health/la-he-komen-foundation-20120208,0,6040809.story?page=1 - http://www.latimes.com/health/la-he-komen-foundation-20120208,0,6040809.story?page=1
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: Charlene
Date Posted: Feb 08 2012 at 9:24am
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I know that Komen has done a lot of good for breast cancer research. However, I started having reservations when I heard about their litigation against other very small groups who used "for the cure" even though the money was being donated to fighting cancer. I continue to be troubled over the recent incident, because I saw and heard Nancy Brinker deny that Karen Handel was involved in the decision to defund Planned Parenthood. I'm sorry, but she was lying.
Charlene
------------- DX 3/10 @59 ILC/TNBC Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED
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Posted By: Lillie
Date Posted: Feb 08 2012 at 5:39pm
Dear Charlene,
I'm with you. Nancy Brinker, in my estimation, is lying. I worked for a large company, owned by 'a big conglomerate'. Some of those top officials are the most polished liars I have ever seen. I just hope the Koeman focus stays where the focus should stay. Helping people and curing cancer.
God Bless,
Lillie
------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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Posted By: 123Donna
Date Posted: Feb 08 2012 at 6:52pm
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Surprised to read that only 15% of the donations last year went to research. This is such a low number for an organization who's mission is to "find a cure".
(Reuters) - The Susan G. Komen for the Cure charity defines its mission as finding a cure for breast cancer. In recent years, however, it has cut by nearly half the proportion of fund-raising dollars it spends on grants to scientists working to understand the causes and develop effective new treatments for the disease.
In 2011, the foundation spent 15 percent, or $63 million, of its donations on research awards that fund studies on everything from hard-core molecular biology to the quality of breast-cancer care for Medicaid patients. http://www.reuters.com/article/2012/02/08/us-usa-healthcare-komen-research-idUSTRE8171KW20120208 - http://www.reuters.com/article/2012/02/08/us-usa-healthcare-komen-research-idUSTRE8171KW20120208
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: 123Donna
Date Posted: Feb 08 2012 at 6:54pm
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http://komenwatch.org/agenda-for-the-future/ - http://komenwatch.org/agenda-for-the-future/
What is Komen’s Role in this Future?Remember that Susan G. Komen for the Cure is a nonprofitorganization, not a nonprofit corporation as http://komenwatch.org/quotes/#nancybrinker - Nancy Brinker refers to it. Act according to sound ethical principles befitting of a nonprofit.Cease partnerships with corporate sponsors who engage in “pinkwashing.”Stop strong-arming other organizations over the phrase “for the cure.” Trademark or not, Komen does not own this common language. Support your sister organizations.Act in accordance with the mission of being “for the cure” and make research the top funding priority.Stop producing messaging and education programs that promote simplistic early detection and lifestyle prevention measures. Early detection is a misnomer for many cancers, and it is no guarantee of a cure.Partner with other breast cancer organizations to produce and disseminate evidence-based breast cancer awareness and education resources. Doing so will result in costs savings and economic synergies.Consider the power of social media and other original ideas in your fundraising efforts. Too many precious resources are being wasted on holding grandscale fundraising events.Prioritize funding and advocate for real prevention by commissioning studies on environmental factors, and by lobbying congress for legislation to stop corporate polluting and the manufacturing and marketing of known carcinogens.Fund research studies that encompass 10-year, 20-year, 30-year periods to gain a better understanding of survival and mortality statistics for ALL stages of disease. Scientists knowthat five-year survival statistics are inaccurate representations of breast cancer survivorship.Recognize the needs of women living with metastatic breast cancer; prioritize research funding in this area.Expand your vision to include other women’s cancers, particularly those that are known or suspected to be associated with the breast cancer genes (e.g. ovarian and colon cancers), those that can result from breast cancer treatments (e.g., uterine cancer, leukemia, and lymphomas), and those with similar causation.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: Charlene
Date Posted: Feb 08 2012 at 7:42pm
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I had no idea that so little of their money went to research, which is certainly what "for the cure" says to me. Donna, thanks for the posting the above. I certainly agree with it! And, hopefully what can come out of all this is more money actually spent finding a cure.
Charlene
------------- DX 3/10 @59 ILC/TNBC Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED
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Posted By: mainsailset
Date Posted: Feb 08 2012 at 9:34pm
I'll let this woman speak for my thoughts on this http://www.americablog.com/2012/02/wow-breast-cancer-survivor-does-youtube.html - http://www.americablog.com/2012/02/wow-breast-cancer-survivor-does-youtube.html
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: BamaRachel
Date Posted: Feb 08 2012 at 9:51pm
When we heard several years ago about how little SGK money went to research and how much went for administrative costs, our fund-raising efforts were diverted to Breast Cancer Research Foundation of Alabama, where all monies raised by that group stay within our state for research. I assume BCRF has affiliations with most, if not all, states (but that's strictly a guess). Haven't researched it. I went to the BCRF luncheon yesterday here in B'ham where a check for $500,000 was given to the UAB Comprehensive Cancer Center for research funding.
------------- DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Posted By: 123Donna
Date Posted: Feb 08 2012 at 10:52pm
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Mainy,
I hope this woman sent SGK a copy of her video. Good for her. She shows what the face of breast cancer really looks like, not some cute pink ribbon.
Rachel,
Probably many, if not most of us, will be looking at other organizations that are deserving of our hard earned dollars. Sounds like you found a good organization where their money is going locally to UAB. I know I'm going to look closer at how an organization's money is spent, how much goes to research, programs, administrative expenses, executive pay, etc.
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Posted By: mainsailset
Date Posted: Feb 09 2012 at 10:06am
Donna, the video has gone viral and I suspect it will circulate for some time to come. It's time all of us took a 2nd look how we and breast cancer is portrayed. I still can't get over her eloqence and courage.
------------- dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Posted By: 123Donna
Date Posted: Feb 09 2012 at 9:45pm
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A former Komen board member calls for organization to clean house http://www.latimes.com/health/boostershots/la-heb-komen-resignation-board-brinker-20120209,0,1606044.story - http://www.latimes.com/health/boostershots/la-heb-komen-resignation-board-brinker-20120209,0,1606044.story
------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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