Theatre director Shakina Nayfack recently launched a medical campaign on YouCaring, a crowdfunding website that exists to help individuals raise funds without any overhead costs. Shakina is a transgender woman who hopes to raise enough money to complete her male to female transition in Thailand in the fall of 2014. Dubbed "KickStartHer," Shakina's campaign seeks to raise $52,500 to cover most or all of the costs associated with her transition.
If you go to the home page of YouCaring, the banner at the top of the screen will flash between stories of people who are in dire need of expensive medical treatment—a child with a brain injury, an adult male in need of a new kidney. To date, YouCaring has helped more than 45,000 people raise almost $38 million to cover emergency expenses.
What are the ethical implications of a transgender female launching a gender reassignment surgery campaign on a website like YouCaring? Is this particular surgery as important as, say, a bone marrow transplant for a 4-year-old girl? Does the former trivialize the latter? Some might consider Shakina's YouCaring campaign to be a hijacking of sorts: stealing from the cyber purse of those in dire need of medical treatment to pay for the luxury or cosmetic expenses of those who are not as bad off. But for Shakina, this surgery is an issue of life and death.
"Ultimately it became for me a question of survival," she explained to me in a phone interview. "As much as I tried to find strategies of coping with this [bodily] incongruity that I felt ... I ended up hitting a breaking point where I realized I had to take action. I had to change or I would die."
The breaking point Shakina described is common in trans narratives. According to the National Center for Transgender Equality, while only 1.6 percent of Americans in general attempt suicide, 41 percent of transgender Americans try to kill themselves. When we consider that the risk for suicide is 25 times higher in trans individuals than in the general population, we can start to see how a transition surgery might be just as necessary for a person's survival as a kidney transplant or cancer treatment.
But even if we acknowledge—and we ought to!—the psychological anguish of people who take their own lives, it's still one thing to say "Johnny will die if he doesn't raise $52,000," and quite another to say "Johnny will kill himself if he doesn't raise $52,000." Of course we should do what we can to prevent death in both instances. But for some of us with limited resources, donating to one fundraiser precludes our donation to another. In this case, is there a way to judge which medical fundraiser is more necessary than the other?
To be sure, the question of adjudicating medical needs isn't off the table: health experts make these and similar decisions every day. But in Shakina's case, "the whole question is sort of moot," says Margaret Moon, a faculty member at the Johns Hopkins Berman Institute of Bioethics. Moon, a practicing physician, points out that crowdfunded medical campaigns aren't asking us to determine which need is greater or more deserving than another. "Crowdsourcing is different than policy," she notes. In other words, no one is asking for a health policy statement on YouCaring.com. All they're doing, says Moon, is saying, "Here's my need—will you help me?"
Questions of need and personal suffering are perhaps unanswerable. "If a tumor is threatening someone's life," says Moon, "then [the need] is obvious." But when it comes to Shakina's or another trans person's inner turmoil, who's to say if her "level of suffering justifies the campaign?" What's more, Moon asks, does there need to be a justification for the campaign?
For Moon, that question starts to get at the real issue, which is: Why is crowdsourcing even necessary in the first place? "Is it OK," she asks, "that we don't have a social safety net" in place for individuals seeking medical treatment that they feel is necessary? Rather than wonder if Shakina ought to raise public funds to defray her medical costs, Moon thinks we should question what will happen to Shakina if her campaign isn't successful. YouCaring is a social safety net that serves those of us daily failed by our healthcare system. What happens, though, if even this safety net doesn't catch us? To whom will Shakina turn if her KickStartHer isn't successful?
We can continue to argue over the ethics of specific medical procedures, focusing all our energies on defining terms like "necessary" and "luxury." Or, we can start to have real discussions about the kind of society that makes websites like YouCaring necessary for the survival and well-being of Shakina and countless others.