On a bright Sunday morning in New York’s Central Park, as October leaves bid a variegated farewell to green, nascent golds and auburns yielded for a few short hours to vibrant pink, the American Cancer Society held a fundraising walk for breast cancer. The local TV news anchors were outfitted in matching pink for the occasion, as was the weather reporter stationed in the park, who would double that morning as compassionate collector of cancer stories, nimbly transitioning from “sorry for your loss” to the prospect for warmer temperatures later in the day. Sleepy Sunday morning television viewers would soon be roused by the stories, the heartfelt reasons participants had chosen to take part. While many walked and jogged, others pledged money, organized, cheered, and lent support, all to raise funds for breast cancer, an illness that had pained bodies, troubled minds, wrenched hearts.
Illness, one’s own or that of a loved one, may leave individuals vulnerable, not only physically and emotionally but decisionally, as well, particularly when it comes to fundraising efforts and solicitations specifically aimed at those affected by an illness. Taking part in or pledging money for a breast cancer walk, with proceeds going to the American Cancer Society, may be thought of as an eminently benevolent manifestation of such an inclination, the desire to contribute time, effort, and money to support research and clinical care for a disease that has hit too close to home.
Contrast the altruism of that sunny October morning with news stories, published only weeks earlier, of deception in fundraising for medical charities, most notably the in-depth, investigative reporting posted on Bloomberg in September. The exceptionally well-researched exposé by David Evans reveals a troubling scene as prominent medical charities contract with telemarketing firms for fundraising (this article focused on telemarketer InfoCision), with the latter keeping most and in some cases – astonishingly – all of the money collected.
While it is important to note that the Bloomberg piece did not address fundraising walks, it did report the following:
“The American Cancer Society, the largest health charity in the U.S., enlisted InfoCision from 1999 to 2011 to raise money. In fiscal 2010, InfoCision gathered $5.3 million for the society. Hundreds of thousands of volunteers took part, but none of that money – not one penny – went to fund cancer research or help patients, according to the society’s filing with the U.S. Internal Revenue Service and the state of Maine. . . . Every bit of it went to InfoCision, the filings say. The society actually lost money on the program that year, according to its filings. InfoCision got to keep 100 percent of the funds it raised, plus $113,006 in fees from the society, government filings show.”
As television screens across the tri-state area beamed an uplifting story of collective altruism, the glow may have been dimmed, for some viewers, by nagging concerns about financial stewardship. The reporting by David Evans highlighted a number of unsettling issues. First, the vulnerability on the part of patients and families to give, coupled with telemarketing industry practices crafted to prey on that inclination. Second, the lack of transparency and disclosure endemic to these practices, including but not limited to telephone scripts that claim falsely inflated shares of the money collected will go to the charity when contracts actually specify, and filings later prove, otherwise. Then there is the scope, the extent to which an array of prominent medical charities, including an organization as renowned and respected as the American Cancer Society, would become ensnared by these practices. Finally, returning to the perspective of patients and families, there are the feelings of injustice and betrayal, the usurping of voluntariness, and the erosion of trust when the deception is, at long last, unveiled.
Given its place on the periphery, this topic, understandably, has garnered relatively scant attention within the bioethics community. Perhaps our interest is further constrained by our perceived inability to change the situation, with interim answers seemingly confined to tired calls for awareness and education. Someday, perhaps, strict limits will be placed on these practices, through regulatory or statutory law or through the courts. (Notably, a seminal 1999 Federal Court of Appeals case, United Cancer Council v. Commissioner of Internal Revenue Service 165 F.3d 1173 (7th Cir. 1999), considered, without resolving, the question of whether a contract between a charity and a for-profit fundraiser may be so disproportionately advantageous to the latter that it jeopardizes the charity's tax exempt status. The appellate court remanded the case to the tax court for further proceedings, but the case settled, leaving open the question of upper limits and formulas to govern these fundraising arrangements.)
Until such time as limits are set, we may be left with little more than a nominal giver beware. Yet for those of us engaged in the nonprofit community, serving on boards, or as administrators, or even as volunteers, there may be an opportunity to do more, to be a voice against deceptive practices, no matter the rationale, and steadfastly for disclosure, transparency and patient protection in all forms.
While this issue may, at first glance, seem to be a matter for those in nonprofit management or tax law, protection of patients and caregivers runs to the heart of bioethics. As these deceptive practices infiltrate health charities, as commercial telemarketers prey on the vulnerabilities of patients and families to donate for a disease, with small-to-negligible fractions of the funds collected actually being spent on research or clinical care, we are confronted with the subversion of well-intentioned altruism, the manipulation of decisional vulnerabilities, and the insidious compromise of respect for persons and justice.
Ready or not, this is our issue too.
Meredith Stark, Ph.D., .M.S., is a faculty member in the Division of Medical Ethics at Weill Cornell Medical College in New York. Joseph J. Fins, M.D., M.A.C.P., is Chief of the Division of Medical Ethics at Weill Cornell, the E. William Davis Jr. Professor of Medical Ethics, a Hastings Center Board Member and Fellow, and chairman of the Fellows Council. The views expressed here are solely those of the authors and not of any affiliated institution.