Anthony Stokes, a fifteen year old kid from Decatur County, Georgia, is expected to die in a matter of months, according to his doctors at the Children’s Healthcare of Atlanta. Maybe, they say, he will live for six months. Who knows? Anthony suffers from an enlarged, increasingly less functional heart. His condition is not unusual, and a reasonably effective cure is at hand: a heart transplant. (Learn more about Anthony’s story here.)
However, Anthony has become the latest victim of a dysfunctional U.S. transplantation system, which tempts Americans with a transplant waiting list, but kicks them off if they become too sick or too old. The problem is that there are too few organs to meet demand, and this perennial problem receives far too little attention from Congress. Indeed, the U.S. transplantation list, coordinated by the United Network for Organ Sharing, UNOS, (a private organization that coordinates significant aspects of the U.S. transplant system) is so overcrowded that patients increasingly turn to black markets in India, China, Pakistan, South Africa, and other countries if they hope to survive. (Learn more about that here.) Congressional hearings document Chinese prisoners dying and shortly thereafter Americans receiving organs.
Anthony’s family and some local organizations claim that racism is behind doctors refusing to place the boy on the transplant list. Anthony is African American. They ask, what is the harm in letting him on the list?
One problem is that doctors perpetuate a system that permits them full discretion in determining who gets the precious heart, liver, kidney, or other organ. To gain entrance on the transplantation waitlist, which is already packed beyond capacity, Anthony and his family must convince doctors that he’s worthy. African Americans have a much more challenging time with this. They are more likely to be rejected than whites and even after placement on the waitlist, more likely to wait longer than other groups. There are complicated reasons for this that deal with matching criteria. However, nowhere else in medicine is there such an explicit litmus test of social value to determine whether a patient is worthy of being saved.
So far, Anthony’s been rejected. But is this racism or gate keeping? Or a bit of both? For years doctors have rationed valuable health commodities—organs and access to elite treatments. Back in the 1960s, a Seattle-based group, euphemistically known as the “God Squad” determined who should have access to dialysis—they ruled out the previously incarcerated, addicts, divorcees, and those who did not graduate from college.
In Anthony’s case, doctors respond that he’s a risky transplant candidate and might be non-compliant, because of low grades and past run-ins with the law. In other words, they don’t want a heart wasted.
The problem in all of this is that race and non-compliance mask the root issue. The U.S. has too few organs to go around because it confines all organ donations and strategies to those which are altruistic. Americans want to donate, but sometimes they too will experience economic risks in doing so. If donating a kidney, lung or lobe of liver, they may lose time and wages from their jobs (during five weeks of recovery). There are real costs to that. Years ago, in Pennsylvania, the legislature tried to increase donations with a small funeral payment. The idea was scrapped when legislators feared the plan might conflict with federal law.
Sadly, even if Anthony makes it on to the list—and he should—he may never receive a heart, because there are simply too few to go around.