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Running For More…

The personal blog and website of Kristen Cincotta

Susan G. Komen for the Cure – My Thoughts

February 25th, 2012 by kscincotta

A disclaimer: These thoughts and opinions are my own. This is a contentious subject for many. I have attempted to include sources for everything that I claim. Please be respectful in the comments!

Introduction

It has now been over three weeks since Susan G. Komen for the Cure first made headlines when it was announced that they would no longer be funding Community Access grants to Planned Parenthood. Over the interceding weeks, there have been a number of developments, including a reversal of that original decision and the subsequent resignation of Karen Handel, Komen’s Vice President of Public Affairs and former GOP candidate for the governor of Georgia. Over time, this story has fallen out of the headlines, with political debates over birth control, Whitney Houston and who knows what else taking center stage. This week, Komen quietly began sending out surveys to their longtime supporters regarding their management of this crisis and how they should move forward from here. I did not receive this survey, although a number of my close friends did. Many of them had a very difficult time completing that survey. They wanted to answer truthfully, but in reality, their feelings on continuing to support Komen going forward were very mixed and unclear. In discussions with those friends and others in the Breast Cancer 3 Day community this week it became obvious to me that while this debate has largely fallen off the radar of the mainstream media, our community of activists, advocates, and fundraisers is still very shaken. Therefore, I wanted to take some time to share my thoughts on this incredibly complex debate and where I stand as far as continuing to support Komen going forward at this time. This post is going to be long and possibly jumbled. I have a lot that I want to say and on many of these points, I remain just as conflicted as everyone else. This is my best attempt to honestly and objectively sort through those conflicted feelings.

A Few Words Regarding Non-Profit Organizations

Because my consideration of the ongoing debate has essentially evolved into my personal evaluation of Susan G. Komen for the Cure as a not for profit public health organization, it has been helpful for me to establish for myself why it is that I chose to support the organizations that I do and the principles that I expect those organizations to follow. This seems to be as good a place as any to start this discussion.

  1. I do not feel that the leaders of a given organization must share my political, religious, or personal beliefs on every single issue in order for us to work together for a cause that we both believe in. This is true of any future employer that I may be privileged to work for and this is true of any not for profit agency that I choose to support. If we are both dedicated to the same cause and share the same principles specifically regarding that cause, then I have no hesitation in working together.
  2. With the magnitude and scope of the challenges facing us today, we cannot expect one organization to do everything by themselves. Even within a cause that sounds focused, like “eradicating breast cancer”, there is still no possible way that one organization can fight that fight on every single front. Organizations have limited resources and must make decisions about how to best allocate those resources towards the mission that they have established for themselves. It is their prerogative to make those decisions how they see fit. It is our prerogative to support those organizations that make the decisions that are the closest to how we would make those same decisions, if we were in a position to do so.
  3. Related to the previous point, I feel that in most instances, it is somewhat unfair to criticize an organization for the work that it chooses not to do. As I said above, all organizations must make choices. If those choices are made in good faith in a way that that organization believes will best allow them to achieve the mission they have established from themselves, it is unfair to be upset at an organization for not doing something we think that they should. There are thousands and thousands of not for profit organizations doing good work towards a plethora of causes. Find the one that is doing the work that you think most needs to be done and put your support behind them rather than wasting time criticizing an organization that is doing alternative good work.

The Issue That Lit the Fire: Should Susan G. Komen for the Cure be Funding Planned Parenthood?

I will state up front that I consider myself to be a very liberal Democrat and that I believe in the work that Planned Parenthood does. I have never had an issue with Susan G. Komen granting money to Planned Parenthood for breast health services and was disappointed to read that they had reversed their position, especially in light of Ambassador Brinker’s strong defense of Komen’s support of Planned Parenthood in her memoir, Promise Me. In many communities, the only option that many women have for any kind of affordable health services is through Planned Parenthood. Many, many women only get breast exams when they go in for their annual exams in order to maintain a prescription for birth control. Because Planned Parenthood is such an important source of birth control and other family planning education for so many women, they end up performing a large number of breast exams as part of their everyday services. Having an organization like Komen supplementing their funding so that they can continue to provide these services is often critical to keeping their doors open in more rural, poor communities.

I was particularly troubled that based on the statements that were released by a number of Komen’s 120 community affiliates (including by both the Atlanta and CNY affiliates), this decision was made by solely by the Susan G. Komen central offices (herein Komen National), with no consultation from the affiliates. The local affiliates of Komen for the Cure are their own corporate entities that are distinct from Komen National. They are only tied together via their affiliate contracts (which, admittedly, I have not personally read). My understanding, though, is that in exchange for the use of the Susan G. Komen name and logo, the affiliates return 25% of the money that they raise locally to Komen National to fund education and research programs (not overhead or corporate salaries, per my local Atlanta affiliate representatives that I talked to). No money actually flows from Komen National to the affiliates. The remaining 75% of the money that is raised by the local affiliates through Race for the Cure and other fundraising events stays within those local communities. It is the affiliates that individually review and choose to reward every single community grant that is awarded by Komen. It really bothered me, then, that Komen National was making this important declaration of how those monies could be allocated without consulting the very people 1, who had actually raised those funds and 2, who best understood what was needed in their individual communities. To me, this represents a strong disconnect between the work being done by the Komen affiliates and the central Komen National offices.

Thankfully, the fallout of this decision on Planned Parenthood appears to be minimal. If anything, they may be stronger now than they were before, having seen an enormous uptick in direct donations following Komen’s decision. Likewise, before I even knew any of this was happening (as I was blissfully hanging out on a cruise ship in the Caribbean at the time), SGK International had also reversed its position, stating that Planned Parenthood’s eligibility to apply for future funding had been restored.

(As a side note, many in the media have claimed that there is some conspiracy in the way Komen’s reversal statement was worded. “Aha! But they haven’t actually committed to funding Planned Parenthood in the future! They only said that Planned Parenthood is eligible to apply again!” I see no such conspiracy in Komen’s statement. Community grants made by Komen affiliates are only approved for one year at a time. To my knowledge, no currently funded grant to Planned Parenthood was defunded. Committing to funding more grants for Planned Parenthood in future years is contrary to their granting model. No organization is guaranteed renewal of their community grants, nor should they be. That goes for Planned Parenthood too.)

Ultimately, this should have been the end of this debate. However, the conflicting reasons that Komen gave for changing their granting policies (which I discuss below) opened the floodgates for much more detailed scrutiny of Komen’s finances and business practices. And that, my friends, is where things get messy and where I get conflicted.

Truthfully, I haven’t invested all of this time into supporting and advocating for Susan G. Komen because of their community outreach work. I think it’s wonderful that are doing that important work, I really do. But I have supported them all of these years because of the education and awareness work that they do and most importantly, for the vast amounts of money that they have raised and invested in breast cancer research. I’m a scientist and I believe in science. Komen is the largest funder of breast cancer research outside of NIH and the federal government. That’s why I support Komen and that’s why I ask others to support them as well on my behalf. Period. While it was troubling, I didn’t initially see how this firestorm over Komen’s community grants criteria should affect my support for their work raising money for breast cancer research. Alas, further research into the motivations behind the Planned Parenthood decision has revealed that those same troubling motivations may be affecting their decisions regarding their greater business practices. And I fear that the scientific research grants that I was so proud to be helping to fund may be hurting as a result.

Susan G. Komen is NOT a Women’s Health Organization – STOP Saying That Is!

Please pardon me this brief interlude, if you will, relating to many of the articles that I’ve read discussing Susan G. Komen’s responsibility to women as a women’s health organization. I want to scream this from the top of every mountain and tattoo it on my forehead: SUSAN G. KOMEN FOR THE CURE IS NOT A WOMEN’S HEALTH ORGANIZATION. Yes, breast cancer affects breasts which happen be a body part found on women. Yes, 1 in 8 women will be touched by breast cancer. But do you know who else has breast tissue that can develop breast cancer? MEN. Trust me, I’ve met them. Per the Komen website, 2190 MEN will get breast cancer this year and more than 400 of them will die from it. That means that one in every five men who are diagnosed with breast cancer will die from the disease. You know why that percentage is so high? Because most men don’t have a clue that they can get breast cancer too, which means that they are often diagnosed at much later stages of the disease. Moreover, many men are so ashamed that they have a “women’s” disease that they won’t even get the proper treatments for it. This is UNACCEPTABLE. Breast cancer is a disease that can strike anyone, any time, any where. As a breast cancer advocacy organization, Susan G. Komen’s responsibility is to promoting the best public health knowledge and treatment available, regardless of whether that knowledge or treatment applies to men or women. Susan G. Komen shouldn’t have continued funding Planned Parenthood because they have an obligation to women. They should have continued funding Planned Parenthood because Planned Parenthood is doing good work. Period.

So Why Did Susan G. Komen Try To Stop Funding Planned Parenthood?

Well, that appears to depend on who you ask and on which sources you read. I don’t think I’ve read a single unbiased report about the real motivations behind Komen’s decision, but I have read pieces that were written from just about every side of this issue imaginable. As best as I can establish, it has been reported that Komen’s decision was based on either:

  1. A legitimate desire on the part of the organization to separate themselves from potentially contentious political issues such as abortion, especially in light of the negative press their ongoing collaboration with Planned Parenthood was generating. As such, a new rule was put in place to help them identify which organizations might be politically “trouble”. This rule established that no organization currently under federal investigation for mismanagement of funds or criminal wrong doing was eligible to receive community or research grants. This is essentially the rationale provided by Susan G. Komen’s own statements and representatives.
  2. A vast right wing conspiracy spearheaded by a GOP nutjob to secretly but explicitly screw over Planned Parenthood in the name of Pro-Lifers everywhere. This is what every liberal media piece seems to want to be true.
  3. A genuine change of community granting principles with the end goal being more direct accountability of the success of those grants. As a result, funds are being redirected from so called “pass through” organizations like Planned Parenthood (who only recommend women for further screening and treatment rather than providing it themselves) and to organizations that directly provide mammography and treatment services to women. Strangely, this is the reasoning that Ambassador Brinker made in her YouTube statement and in her interview with Andrea Mitchell.

To me, my best guess is that the real reason is somewhere hiding in the middle of all that. Were the ongoing grants to Planned Parenthood causing Komen headaches? Yes, definitely. While I haven’t experienced it directly, many of my fellow 3 Day walkers and Race for the Cure runners have been told explicitly by friends and family that they will not donate to an organization that supports Planned Parenthood. Komen also lost a number of corporate sponsors, like Curves Fitness, due to their ongoing support of Planned Parenthood. Moreover, it has been widely reported that many of the members of Komen’s corporate board of directors and major donors are conservatives who believed that abortion should be illegal. It is not a stretch to believe that Komen was looking for a reason to cut ties with Planned Parenthood. Abortion, and by extension, abortion providers like Planned Parenthood are lightening rods for controversy. I think it’s valid that Komen wanted to distance themselves not just from Planned Parenthood but from any organization that is likely to bring unneeded controversy into the cause of breast cancer advocacy, a cause that has plenty of its own controversy already.

Moreover, I do think that Karen Handel played a huge role in magnifying the controversy and coming up with the reasoning that was given for cutting ties with Planned Parenthood. I live in Georgia and am very familiar with Handel’s politics and positions. She and I don’t agree on much, that’s for sure. However, I will give her the extreme benefit of the doubt that she did not take a job at Komen specifically to screw over Planned Parenthood. My guess is that this is an issue that Komen was already debating and because it is a cause that is important to her, Handel jumped on it. I have read reports that she trumped up the relatively moderate baseline level of negative feedback that Komen was getting on this issue and that she personally helped draft a rule that would specifically exclude Planned Parenthood. Unfortunately, the rule that Handel and others came up with doesn’t really hold water, for two reasons:

  1. Susan G. Komen is currently funding $7.5 million dollars of breast cancer research at Penn State. Penn State, like Planned Parenthood, is currently under federal investigation for the mismanagement of the Jerry Sandusky scandal. As such, Penn State should likewise be excluded from receiving Komen grants, even under the newly modified rule that allows funding to Planned Parenthood (I think). That does not appear to be the case.
  2. Susan G. Komen is also still doing business with Bank of America. In fact, Bank of America is one of the largest corporate sponsors of Susan G. Komen. Bank of America also under investigation in a number of local, state, and federal courts for their role in the mortgage crisis, among other things. Which means Komen feels comfortable doing business with organizations that are under investigation when it benefits them but not when it causes harm to their brand?

So, yeah. The new rule appears to have crafted specifically to block funds to Planned Parenthood without a lot of consideration about how else it would applied.

Now, what about the reason Ambassador Brinker has given? Well, to me, that reason seems valid. Komen wants to be able to quantify the true impact of their dollar. It’s easier to do that if you’re directly funding screening, not recommendations. The question is, if that was the real reason for cutting funding to Planned Parenthood, why wasn’t it the only reason given? This is per conjecture on my part, but my guess is this is the reasoning Ambassador Brinker WANTED to give for the funding change all along, but that the rest of the board didn’t feel that it was the best way to structure their message. They should have listened to Nancy, I’m afraid. Instead, it just all goes to emphasize one very important thing about Susan G. Komen: they are no longer making decisions about how to best fight breast cancer based solely on what is best for the fight against breast cancer. Social politics and brand management seems to be growing in importance in the world of Susan G. Komen for the Cure. And that extends to more than just their community grant making policies.

The Work That Komen Chooses Not To Do May Be More Important Than The Work They Choose To Do

Yes, I know I said right at the top that in most instances, we should not criticize an organization for the work they don’t do because all organizations must make decisions about how to best allocate their resources. However, I also qualified that statement by saying that this only applied when “those choices are made in good faith in a way that that organization believes will best allow them to achieve the mission they have established from themselves.” From what I’ve read, I’m not sure that Komen National is making their business decisions in good faith at this time. The changing explanations regarding the Planned Parenthood grants suggests this is the case. I have a few other examples as well that have led me to question Komen’s motivations and I’m going to work through each of them here.

1. Susan G. Komen funding for breast cancer research has fallen to just 15% of their overall budget, down from 29% of their budget as recently as 2008. Meanwhile, more than 18% of their budget covers fundraising and administration.

As I said above, I have chosen to devote my time to Susan G. Komen because they are largest funder of breast cancer research outside of the federal government. And make no mistake, that 15% of their budget accounts for $63 million dollars of research funding this year alone that we otherwise would not have. I also fully acknowledge that Komen National is choosing to fight breast cancer on multiple fronts, with 43% of their annual budget in 2011 going towards education, 12% to screening and 5% to treatment. As such, the funding pie must be cut up into multiple slices. However, it is troubling to me that during a period when the annual revenue that Komen collects has increased from $100 million to close to $420 million, the relative amount allocated to research has gotten chopped in half. Education and screening are important and I will not deny that. But those programs will not find a cure for breast cancer. Only research will do that. And as another writer pointed out (and frustratingly I can’t find the link where I read this), how can an organization continue to brand itself as being “for the cure” when they are devoting less and less resources to the one area that could actually find said cure?

Frankly, these numbers were eye-opening to me as a scientist and a representative of Susan G. Komen. They also pissed me the hell off.

2. The research that Susan G. Komen is funding is only focused on screening technology and treatments, not prevention.

I’ve read this in a number of places (most clearly in this article by Dr. Susan Love) and I both find it troubling and I also don’t care. Truthfully. From what I have read, and this is an area I’m admittedly still actively reading and learning more about, it does appear that when it comes to setting funding priorities, Komen does value work on treatment and screening above prevention and the basic science of cancer. I am not going to get into the pros and cons of each type of research here. I intend to cover it more in much more depth in future blog posts because it’s both fascinating to consider and also really important. But it’s a bit beyond the scope of this already very long post. However, I do want to talk about the alleged motivations that appear to be behind Komen’s funding priorities.

It has been reported that many of Komen’s board members, including Ambassador Brinker herself, also sit on the boards of other pharmaceutical companies, biotechnology companies and the like potentially creating serious conflicts of interest. This is not a unique situation to Komen National (as evidenced by this similar critique of the American Cancer Society), although it does appear to more common here than on other boards. As a result, many in the media have alleged that Komen National chooses to fund screening and treatments because that is the type of research that benefits the other companies that they work for. Prevention, on the other hand, makes no money for anyone since you can’t make money off a disease that no one is getting anymore. (Just ask the people that make polio meds!) Moreover, I have read assertions that Komen chooses not to delve too deeply into the environmental causes of cancer because the large companies that the board members also work for are ardently opposed to stricter environmental restrictions and laws.

I have no idea how true any of these claims are and seeings as I’m not on the Komen Board of Directors myself, I have no way of finding out. These are certainly damning allegations to make of the organization and an incredibly troubling revelation if it is true. However, I think it’s unfair to draw big red Xs on Komen based on what is so far speculation and gossip. For now, though, this something I am also keeping my eyes on especially with regards to the Komen Advocacy Alliance‘s legislative priorities.

An important point, though, before I move on. At no point in this section have I said that the work that Komen is funding should not be funded. We need to be funding research into every aspect of breast cancer that we can think of. Genetic causes, environmental causes, biological causes, screening, diagnoses, predicting prognoses, treatments, ALL OF IT. Susan G. Komen is choosing to focus their efforts and their money primarily on two specific areas of research: screening and treatment. They cannot single-handedly fund all of the research that is needed on this disease and the work they are funding needs to be done. For me, it comes down to a question of if I believe they are funding the MOST valuable work and if not, is there another organization that is that I would prefer to support instead? That’s a question we all need to answer for ourselves and it’s still an open question for me.

3. Susan G. Komen is no longer funding embryonic stem cell research. Or something like that.

This is a topic that is important to me more for what it says about how Komen makes its funding decisions rather than the issue itself. It is also a topic that has been at the center of boatloads of misinformation. Let me try to walk through what has been reported and importantly, by whom.

In July of 2011, LifeNews.com (a Christian conservative pro-life website) reported that by their estimation, in 2010, Susan G. Komen had funded almost $11 million dollars of research that was taking place at institutions where embryonic stem cell (or ESC) research was also taking place. Not that Komen was directly funding the ESC research itself (which it wasn’t and has never funded, per Komen’s own reporting), but that Komen was funding other research at institutions where totally other researchers studying completely different things were using ESCs. In the fallout from the Planned Parenthood debacle, LifeNews.com reported that in addition to this massive “victory” over Planned Parenthood, the “pro-life” forces at Komen had also driven Komen to quietly change their policy on ESC back in November 2011. In particular, they referenced this particular quote from a statement that Komen no longer has on their website (but which I have a copy of and can share if anyone wants it):

Komen supports research on the isolation, derivation, production, and testing of stem cells that are capable of producing all or almost all of the cell types of the developing body and may result in improved understanding of or treatments for breast cancer, but are derived without creating a human embryo or destroying a human embryo.

Moreover, Lifenews.com (and other outlets that then picked up the story like Care2.com) somehow then claimed that Komen was straight up pulling funding from organizations like Johns Hopkins and the University of Kansas Medical Center because ESC research was being done at those organizations. Ultimately, it was being reported that as much as $12 million dollars in funding was being cut. (Or more accurately, “redistributed” to other researchers, I suppose.)

So, that’s troubling. If the most promising research for curing breast cancer happens to involve ESCs, Komen just isn’t going to fund it? Because of social issues? Or even worse, that if the most promising research for curing breast cancer happens to be taking place at an organization where ESC research is also taking place in a completely different lab then Komen’s not going to fund it either?! That’s not acceptable to me and in my estimation demonstrates that Komen is no longer making funding decisions based solely on what is best for their mission of curing breast cancer. This is, to put it bluntly, my ultimate dealbreaker with Komen.

But… that’s not the end of this debate because that doesn’t seem to actually be true. While the above quoted statement DID appear on Komen’s website in November of 2011, it is not their current stated policy, which was clarified in an updated statement that appeared on their website on February 5th. Rather, they stated emphatically that they had not defunded anyone over the use of ESCs, either by themselves directly or by other researchers at their institutions. They also again emphasized that they have never funded ESC research because it just hasn’t been promising for treating breast cancer. To quote the actual statement directly:

Embryonic stem cells are currently considered to have the most potential for use in the regeneration of diseased or injured tissues. Whether embryonic stem cells will have a role or will be of value in the fight against breast cancer has not been clearly determined. To this point, embryonic stem cell research has not shown promise for application in breast cancer. Contrary to circulating online reports, Komen has not “de-funded” any grantee based on human embryonic stem cell research conducted at their institution. Komen will continue to focus its research efforts on the most promising areas of science which have the greatest potential for breast cancer patients.

Moreover, the ScienceInsider (an online magazine by the American Association for the Advancement of Science or AAAS) reported that minimally, no funding had been pulled from the Komen funded researchers at Johns Hopkins, one of the main organizations mentioned in the various LifeNews.com reports.

Granted, the new statement posted on the Komen website does not state that Komen will fund ESC research in the future if it should prove valuable to do so. I hope that going forward, Komen considers grant applications for scientific funding solely based on their scientific merit regardless of social issues. They should operate as an objective disseminater of donated funds, not letting political pressure affect their decisions.  It is what is right for their cause and for the patients who have pinned their hopes on Komen actually finding a cure. Like I said about the percentage of Komen funds going to research each year, I’m going to be keeping my eye on this issue too.

4. Susan G. Komen is spending too much money on Nancy Brinker’s fancy lifestyle/suing smaller organizations/advertising themselves.

All legitimate complaints relating to Komen National’s business practices. Susan G. Komen claims to spend 83 cents of every dollar on “mission programs”, which includes that rather large 43% of the budget allocated for “education”. At least one analysis of this “education” budget reveals that it includes money allocated for things like postage and shipping, printing, salaries and a whole lot of “other” things. That seems like money that could possibly be better spent. Ambassador Brinker is paid A LOT of money as the CEO of the charitable organization that she founded. It should be noted that this seems to be on par with CEO compensation for other major not for profit agencies, per the quotes from the president of Charity Navigator in this interesting article. She also was apparently reimbursed by Komen for some $150,000 in expenses when she was employed by the Bush Administration, including paying for first class flights. Also falling under this category of potentially wasteful business practices is the huge debate last year around the amount of money Komen was spending suing smaller organizations that were infringing on their copyrights (which my friend Jay did a bang up job of summarizing here and here). Again, that money probably could have been better spent.

The reality is that not for profits that operate on the scale of Komen for the Cure are big businesses. For good or for bad, there are people whose livelihoods depend entirely on these organizations succeeding. There are costs associated with running businesses of this scale. Are Komen’s business practices established by what is best for their brand, their board, or their mission? I think each person has to make that decision for themselves. If you don’t think Komen’s business practices are in line with how you would run this business, then it is your right and responsibility  to find an organization to support that is more in line with your beliefs. All of these little things individually don’t bother me personally. I understand the cost of running a business. Hell, I’m trying to get hired by one of these organizations. But all together, in line with the other points we’ve discussed so far? I have serious concerns. I think Komen’s motivations have shifted a bit and that it would behoove them to re-examine their priorities and recent decisions. I am hopeful that this increased scrutiny on Komen will result in what was once a strong and trustworthy organization returning to former glory. I really am.

My Grave Concern and Where I Go From Here

In the end, whether you continue to support Susan G. Komen for the Cure or not, that is your decision. They are a good organization that is continuing to do good work and that cannot be contested. They are continuing to fund important community support programs. They are continuing to fund research into better treatments and improved screening and diagnostics. Komen has done amazing work at educating the public about breast cancer and they continue to do so. I am proud to support anyone who continues to advocate for them via the Race for the Cure, the Breast Cancer 3 Day or any other activity. In fact, after talking to some representatives from the Atlanta Komen Affiliate, I am proud to stand by them in support of their community outreach and education work. Be on the look out for posts about the upcoming Atlanta Race for the Cure soon!

That being said, as outlined in detail above, I am no longer convinced that Susan G. Komen for the Cure at the national level is the breast cancer advocacy organization that best reflects my personal beliefs for how to most effectively (and quickly) eradicate breast cancer once and for all. As such, I am strongly reconsidering if I want to continue advocating on their behalf. I have too many reservations about their business practices and funding decisions to ask others to donate to their organization in my name at this time. I think Komen is about to undergo some major internal renovations. I am hopeful that these changes will be for the better and that I can again stand with Komen in the future.

I am currently researching other breast cancer (and general cancer) organizations and will post again in the future about what I find. It would be unfair to put Komen through this level of scrutiny without doing the same to other breast cancer organizations that I am considering supporting instead. In the end, I may find that Komen is still the organization that is doing the most effective work against breast cancer. They may not be. I owe it to myself and those who have donated to me in the past (and hopefully in the future) to do that research.

Ultimately, my greatest fear is that the growing backlash against Komen is going to translate into millions of dollars that are lost from a cause that can’t afford to lose money or support. The one thing that Komen does better than anyone else is make it easy for regular people to get involved. Whether you want to run a marathon, walk 60 miles, run a 5K or just buy something pink, Komen has a way for you to contribute. If you want to raise $2300 or just $23 dollars, Komen makes fundraising on their behalf easy. Frustratingly, other organizations make it a lot harder, especially if, like me, you feel you can have more of an impact rallying others rather than writing a check. Please, if you have given up on Komen, don’t give up on this fight. Do your research and figure out how you can stay involved through other organizations, even if it’s hard to do. Keep checking back here as I’m planning to highlight other ways to get involved in the fight against breast cancer, just as I have always done. Whatever you do, STAY IN THIS FIGHT. People like my mom need you.

“Cancer doesn’t have a political affiliation, and is purely pro-death. Therefore I will remain steadfastly pro-cure.” ~ Julie Brock

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8 Responses to “Susan G. Komen for the Cure – My Thoughts”

  1. Andrea Cecconi says:

    I’m not going to comment at great length, but I wanted to note a few things. In advance, this was as well-researched, well-considered, and well-written a commentary as any (more than most, I dare say) than anything written on the controversy. Because you have been an ambassador for Komen, it’s both painful and heartening to experience this through your eyes. It has to suck for you, KC, and I am so sorry for that.

    So. Here’s some additional context worth considering. In the end, women and men are affected by breast cancer but Komen has built their brand as an advocacy group with specific focus on WOMEN. Do a quick look at their marketing. How many pictures out of every ten that you see in their advertising are women? I would guess 9 of 10. The perception that Komen is concerned about women’s health is deliberately and intentionally crafted by very skilled folks. The reason this is important is that the PP grant cuts are taking place within a larger political context– national attacks (I believe) on women’s overall access to health care (specifically, reproductive care). The ‘religious liberty’ red herring being raised about the requirement that birth control be covered by employers under the ACA– is not, in my view, about religious liberty. If it were, the compromise the White House worked out would have taken care of those concerns. It is a threat to limit access to birth control for women. Add on top of this the existing Alan West investigation of PP and the latest shenanigans out of Virginia, almost-home of forced transvaginal ultrasounds pre-abortion? Awful. The Komen/PP news broke in the midst of what I experience as a wholesale attack on women and our ability to seek affordable care for our specific health needs.

    In the end, Komen had been very successful in getting folks to believe that they can be trusted– by women– to be advocates FOR women. That is their brand.

    So their error was not considering what a betrayal it would appear to be to the many thousands of women who (due to deliberate effort and strategies on their part) believed that Komen’s advocacy was for THEM and their health. You point out that Komen is not an advocacy org for women’s health but I would argue that a tremendous part of their success has been because they have created the perception that this is so.

    And that is going to be very hard to overcome. It was a calculated effort on Komen’s part to instill in me the belief that they were fighting for my health in their fight against breast cancer, as a woman. And therefore a really stupid error to imagine that this cut to PP would not be experienced as a violation of their core beliefs and thus a real betrayal. Trust has been lost and their brand was built on trust.

    I’m noting the context and branding stuff as fairly objective analysis but the betrayal as my experience of this. Which is why they HAVE lost my support.

    For what its worth, I’ll continue to give to the America Cancer Society gladly, and look for other ways to help.

    Keep writing, Dr. C :-)

  2. Alexandra says:

    Thank you for a very well written summation of the whole debacle. As a 20 year Komen donor, I have not quite figured out what I want to do next. For me, the worst part seemed to be the changing story about what really happened. That lost my trust in a way that can not be immediately fixed.

    The one part I disagree with you about is whether Nancy’s pass through grant excuse was valid. I found it pretty ridiculous. Just as you mentioned that if the investigation excuse were true, then places like Penn State would not be funded, the same is true for the many other organizations that could also be described as pass through. Like the YWCA that also does referrals yet gets twice the funding of PP. There are actually hundreds of organizations that are funded solely for education purposes, with no breast screenings at all. As none of those organizations were mentioned for defunding, I saw that as yet another flimsy excuse to justify what was actually a purely political decision.

    That said, I really appreciate the work you put into this article, and I look forward to reading your views on some of the other breast cancer organizations.

  3. Thank you for a well researched article. I find the Komen Organization not trustworthy. Their excuses to defund Planned Parenthood were untrue and I do not feel they are a true partner for finding a cure, especially since they do not support stem cell research. Their decision to hire Karen Handel – one who campaigned against funding Planned Parenthood – was deliberate. That tells me all I need to know. I will not purchase anything with the Komen pink logo on it and will not support any race or event that funds Komen!!

  4. emily holmes says:

    Thank you for this very good review of the issues. I have long had a concern with the marketing aspects of the Komen foundation, its close ties to pharmaceutical companies, its seeming disinterest in environmental issues and a few other things. I don’t have a problem with the salaries as I think they’re competitive, but I do have a problem with the some of the expense issues and the message a leader sends by flying first class. That should never be a practice in a non-profit organization.

    I cannot ignore the current leadership’s blatant fabrication of a new policy to justify their decision to defund PP. It’s difficult to be in the middle of two sides of a political issue or any other issue. Good leaders would choose a course and make it transparent. Their lack of leadership and integrity in standing up for their decision and their mission is inexcusable. They didn’t do it and couldn’t do it because their decision wasn’t about their mission; it was political. Brinker does not get a pass from me. A good leader has to be able to stand up to a Board and keep the organization focused on the mission. She has allowed outside influence – corporate and political – to penetrate SGK.. The other problems that have surfaced under close scrutiny since the PP issue just add to my conviction .

    I no longer trust them and will not support them unless the current leadership – Brinker and the Board – resigns and is replaced.

    I look forward to your thoughts on other organizations that are efficient and dedicated to research and finding a cure.

  5. I really like your writing style, excellent information, appreciate it for posting : D.

  6. kristin says:

    This reminds me of just how smart you are! Thank you for sharing your well-researched opinion and thoughts.

  7. […] of an important cause. ~Vanessa Bush Copyright © American Library Association. All rights reservedBreast cancer advocacy is being transformed from meaningful civic participation into purchasing prod…ducts from yogurt to cars, slicing off a portion of proceeds to support breast cancer research. […]

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    […]Susan G. Komen for the Cure – My Thoughts « Kristen Cincotta[…]…

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