BRATTLEBORO — In the midst or aftermath of tragedy and loss, many people have found themselves supporting or creating a cause to address the honor and memory of those who died, or to fulfill a promise to those who struggled with an illness or other life threatening situation.
Started with good intentions and hope for a better future, some of these movements turn into organizations or foundations that have succeeded, failed, or hit challenges along the way.
One such organization is the Susan G. Komen for the Cure, a fundraising organization that, in essence, came to act more like a corporation.
How?
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In 1982, Nancy Goodman Brinker decided to fulfill a promise to her sister to fight to end cancer.
Brinker's older sister, Susan, had lived with breast cancer for three years, eventually dying from the disease in 1980. Brinker founded the organization that was initially called the Susan G. Komen Breast Cancer Foundation.
In 2007, 25 years after it was founded, the organization became Susan G. Komen for the Cure and adopted the pink ribbon as its trademarked logo. Brinker became CEO in 2009.
On many levels, Susan B. Komen for the Cure has been a success. As a nonprofit, tax-exempt organization, it reported revenue of $171 million in 2009, $135 million raised through contributions and grants and another $33 million in the Race for the Cure fundraisers. The rest is accounted for through investments and other fundraising ($1.5 billion).
However, Komen has come under severe criticism, with concerns being framed on several levels.
One is that despite the amount of money and resources generated, breast cancer continues to ravage women. In some estimates, the disease has gotten worse and there have not been the significant advances that Komen claims have happened.
Critics believe that Komen has certainly supported awareness of breast cancer and mammograms and has helped to de-stigmatize the disease, but it has not appropriated enough money toward research and cure.
Mammograms and early screenings are highly encouraged by Komen, yet these measures continue to be controversial due to false positives and what some consider unnecessary exposure to radiation.
A second issue with Komen has to do with the pink-ribbon campaign, which one cancer survivor, Barbara Ehrenreich, author of Nickel and Dimed, called “the breast-cancer cult.”
Writing in Harper's in 2001, Ehrenreich noted that “[i]n the harshest judgment, the breast-cancer cult serves as an accomplice in global poisoning - normalizing cancer, prettying it up, even presenting it, perversely, as a positive and enviable experience.”
Ehrenreich, among others, believes that Komen is not addressing the real environmental causes of cancer and that women should be angry and in the streets about the disease instead of simply donning pink ribbons.
Others have criticized “pink washing,” the phenomenon of companies selling products with pink ribbons and, in the end, never donating one cent to the prevention or cure of cancer. Even worse, some such packaged products have actually contained cancer-causing agents.
Awareness of “pink washing” has actually led to the creation of films such as Pink Ribbons, Inc. Such films work to expose the ties to corporate funding and to encourage women to demand more effective research.
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But among all the criticisms of Komen, the one that has generated the most visible controversy and has awakened awareness of other concerns is that of its recent political action and decision making process within the ranks of the organization.
Despite the positive work that Komen has done toward breast cancer awareness, the foundation recently made decisions that brought unprecedented attention and upset to the organization.
Amid the many partner organizations that Komen has worked with over the past decade, Planned Parenthood is an organization that has worked for over 90 years to support reproductive and other health care for both men and women.
As a provider of health care and advocacy to people from all walks of life, Planned Parenthood has also come under fire because it provides abortions (only 3 percent of its services in 2010), birth control, and other sexual-health advice that is contrary to the beliefs or political views of some people, mostly conservatives.
In the past five years, Komen gave enough funding to Planned Parenthood to pay for more than 170,000 mammogram referrals and breast exams. Most of the clients served were women, typically low-income, who have had limited access to health care.
However, despite this direct connection to its mission, the organization voted to de-fund Planned Parenthood in late January, leading to fallout that will most likely forever change the landscape of not only Komen, but of breast-cancer research and advocacy.
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Komen claimed that the action was necessary because of a newly developed internal guideline that prevented it from funding any organization under congressional investigation.
Planned Parenthood has generally been under attack because it performs abortions, and there is controversy as to whether public funds for contraception and screenings should be given to an organization that also performs this legal and protected choice for women.
Representative Cliff Stearns, a Florida Republican, did start an investigation by the House Energy and Commerce Committee's Oversight and Investigations Subcommittee to determine whether government funding for Planned Parenthood had been used for abortions.
Many believe, however, that this investigation was meant to harass Planned Parenthood, despite recent federal audits that showed there was no misconduct.
Following the announcement by Komen, the outcry among many - including state Representatives, everyday contributors to the nonprofit, and leadership within the foundation itself - resonated throughout the media and through social media.
Within days, more than 75 percent of all comments on the issue took the side of Planned Parenthood, by one estimate.
Komen failed to take into account the concept of groundswell, the phenomenon of everyday people using social media to communicate, connect, activate, and organize. The organization failed to consider the very audience it served and essentially enraged a lot of people.
Four days after the decision, Komen reversed the ban on funding Planned Parenthood. Although this step was a positive move for Planned Parenthood, the overall impact on Komen remains to be seen.
The support for Planned Parenthood following the ban was so evident that within 24 hours, the organization received a surge in donations - more than $650,000, almost the same amount it received from Komen in one year. In the days following the decision, $3 million was raised.
This action cannot be ignored by Komen, and the organization needs to consider how the decision to cut funding was made in the first place.
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Because the perceptions within and beyond Komen are conflicting, the real reasons behind the decision process to de-fund Planned Parenthood might never be known.
However, it is possible to speculate within reason how the Komen organization made its choices and responded to the feedback that followed.
Initially, Komen publicly cited its new rule about funding organizations under investigation as the primary reason for its actions. Yet, its reasons became even less transparent in the days following the announcement.
In one interview, Brinker (founder and CEO) and President Elizabeth Thompson both said the decision was not about congressional investigations but because Planned Parenthood did not provide mammograms on-site.
Quick response from Komen did help quell some of the negative press, including statements from members of Congress who first criticized the organization, then praised it for reversing its decision.
Clearly, the transparency of decision-making within Komen continues to be debated even months beyond the event.
But in the end, the public image of Komen has been forever altered.
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The role of Komen in the world of cancer prevention has until recently been seen as unifying and fairly non-political in nature. Because cancer is a disease without discrimination, it hits people of every demographic variance possible.
Komen was able to provide a venue for anyone from anywhere to participate in events that would make people feel empowered against this disease.
Komen has managed to relay a message of who it is as an organization. Yet, as a result of the Planned Parenthood debacle, the organization is under scrutiny like never before.
Komen attempted but failed to control what the general public thought of the organization and, in the aftermath of this event, concerns about the foundation's work have been debated more openly. The voices of those critical of Komen are louder, and the direction Komen is going is being watched closely.
Komen will need to do a lot of repair work on the impressions that both the general public and the media have about the organization. In her book Pink Ribbons, Inc., Samantha King critiques Komen's relationship with the corporate world because of how that world has a negative impact on the research that questions the role of cancer-related toxins.
This corporate connection is one that is creating ethical issues within Komen. Other corporations and entities that are under investigation still get featured on Komen's website or receive funding from them despite the new rules within the organization that ostensibly applied to Planned Parenthood.
Although Komen changed its rules to include only investigations that are criminally conclusive, the foundation has yet to sever ties with corporations or entities that truly were under investigation.
Shortly after the Planned Parenthood funding debacle, Mother Jones reported that that Penn State, also currently under investigation, had received more than $7 million from Komen for research, yet this was never an issue with Komen.
The lack of congruity within Komen to apply new rules equitably continues to raise skepticism as to the real motivations behind the defunding of Planned Parenthood.
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Komen has since had to deal with several reverberations within and beyond its doors.
Six senior staff left Komen, including Vice President Karen Handel, who blamed Planned Parenthood for creating the mess, insisting that she had nothing to do with the internal decision. Later, in an interview with Huffington Post, Handel admitted that she did have influence in the final decision, just not sole responsibility.
Handel had also publicly stated her political goals to defund Planned Parenthood in her run for Florida Governor in 2010. According to one Komen source, she pushed the organization repeatedly to do the same.
Clearly, politics played a role in this decision, and in the end, Komen paid the price - internally and externally.
Early on, the organization also reported losing some money from funders and runners who had stopped participating as vehemently. Even some longtime corporate sponsors like Ford, which has continued to fund Komen, tweeted that “politics should not be involved in cancer research.”
It is not clear what long-term impact could be made for Komen or what turn its corporate funding could take.
Even in the short term, Komen is feeling direct reverberations. One poll taken measured the organization's popularity decline from No. 2 as a fundraising group in the pool in January to No. 56 in February. The only group ever to fall farther from grace was Fannie Mae.
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Organizations need to pay attention to the level of their diversity and culture - not only by understanding their employees, but also their clients or customers.
Cutting off mammogram services to a lower-income population was not taking into account the people who need support. The well-paid staff of Komen might well benefit from some cultural competency or socioeconomic health disparities so that they become more aware of the impact of such decisions.
Komen, whose right-wing links have emerged in the media since the defunding, also needs to recommit to women, regardless of its leadership's political views on abortion. It should revisit its politics and seek input that is less divisive.
Komen needs to pay attention to whom it hires as top officials. Handel's negative and political stance about Planned Parenthood was well known, yet in a huge oversight, Komen hired her despite her public opposition to a major partner.
Komen might also communicate better with those it serves and to be more transparent about how decisions are being made: Not only funding decisions, but other decisions around stem-cell research or research on environmental carcinogens.
Finally, Komen could make better use of Twitter, Facebook, and other social media to pay attention to those it serves.
Probably the best solution would have been not to have made the decision in the first place. But the next best thing was for Komen to publicly reverse its decision. Only time will tell what its long-term impact.
The best conclusion comes from Ellen Shaffer, co-director of the Trust Women/Silver Ribbon Campaign, and Judy Norsigian, co-founder and executive director of Our Bodies Ourselves, who wrote about the Komen/Planned Parenthood issues this spring.
“The entire debacle can be seen as a victory for Planned Parenthood and for women nationwide,” they wrote, ”but we must now start thinking about how to mobilize an outcry to really stop the attacks on women's health.”