Two Americas

Newsweek has a great (but depressing, if not surprising) article called Who Gets the Organs? about the disparity between the ethnic make-up of organ transplant waiting lists and organ recipients.

According to figures from the United Network for Organ Sharing (UNOS), which administers the organ-allocation system, ethnic minorities make up 50 percent of the 96,581 people on the waiting list, but white patients receive 63 percent of organs. Even for kidney transplants, for which Medicare funding should provide a level playing field, minorities made up 60 percent of the waiting list, but less than 45 percent of transplants. "This is just the tip of the iceberg," says Dr. Ashwini Sehgal, assistant professor of biostatistics at Case Western Reserve University. A growing body of research shows that black and Hispanic patients face longer delays in getting referred, spend longer on the waiting list and have worse survival rates even after receiving an organ.

One of the doctors interviewed, Dr. Devon John, who is a black transplant surgeon at the NYU Medical Center, notes that the disparity is “well recognized, but highly controversial.” Part of the problem, according to some researchers, is “an imbalance in supply and demand of suitable organs for minorities.”

Although race isn't an explicit factor, minority patients—especially African-Americans—are more genetically diverse, making it harder for them to find suitable tissue matches. Black and Hispanic people donate organs at the same rate as whites, but they are predisposed to organ-damaging diseases like diabetes, so that in spite of campaigns to promote organ donation in minority communities, there's no way for minority donation alone to keep up with the minority demand for organs. Doctors must struggle to find suitable matches for black and Hispanic patients among predominantly white donors.

The article doesn’t explain exactly of what the campaigns to promote organ donation consist. If they mirror traditional organ donation campaigns, part of the issue may be related to one of the contributing problems during the aftermath of Katrina—greater numbers of poor minorities don't drive. At least in Indiana and Illinois, getting one's driver's license is the primary venue for organ donation campaigns and making a decision about whether to register as an organ donor. Outside of that experience, I’ve never seen any other information about organ donation, and I lived in the most racially diverse neighborhood in Chicago for a decade. Unless it's discussed with family, who then also happen to be in the right place at the right time in case of an accident, there are probably lots of people with usable organs that aren't used simply because they never thought about it or their wishes weren't known.

And, in truth, a dearth of suitable matches is not the end of the story.

In theory, allocation of organs is race-neutral. Patients receive points for medical need, tissue type and time on the waiting list; doctors use a computer algorithm to decide who gets organs. But they admit the system doesn't always work as intended. Computer programs alone can't eliminate the potential for subconscious bias—or overt racism—among the physicians who use them. "The computer may be colorblind, but the people who put information into the computer are not," says Dr. Clive Callender, director of the Howard University Hospital transplant center. "This is directly the consequence of institutionalized racism."

Pam sums it up nicely: “Matching criteria for organs and patients is clearly a complicating factor, but once that and the general disparity in access to appropriate care and known bias is factored in, you've got a deadly and unfortunate combination that is a blow to minority patients at every step of the process.” Poverty and racism (particularly when combined) have created a second-tier health system. Or, in truth, a third-tier health system, lowest rung on a ladder at the top of which sit the extraordinarily wealthy. Certainly, not all doctors are racists, but it's foolish and illogical to presume that those who have a calling in medicine are somehow more likely to be collectively exempt from the endemic prejudices found in the larger population.

I had occasion to visit a doctor in Gary not long ago, who, if I recall correctly, had a gastrointestinal speciality—a private practice. His waiting room was unlike anything I’d seen in a doctor’s office before—it was teeming with people, all black, who had filled not only every available seat, but every available inch of floor space as well except for a thin walkway leading back to the examination rooms. I was just there for him to sign something, so I was ushered through to the examination rooms immediately, and I could hear the muttered comments, not even angry, but resigned: “I’ve been here three hours.” “Typical.” “White girl goes straight in.” I so wanted to tell them that I wasn’t there to be treated, not because I wanted to defend myself, but because I didn’t want them to think their doctor was an asshole.

But I didn’t really know that. Maybe he was.