Stereotyping Patients, and Their Ailments

June 20, 2011

When Mr. S. was doing time at Rikers Island in the early 1990s, he was given a standard battery of tests for the medical ailments that run rampant behind bars — AIDS, hepatitis, tuberculosis. He received the unwelcome news that he was H.I.V. positive, though his T-cell count was still in the normal range.

The New York Times

After his release from prison, he made his way to our hospital’s H.I.V. clinic. He took his medications and showed up for his appointments, but he almost never got lab tests, since decades of drug use had obliterated his veins.

Despite the other medical assaults on his body — diabetes, hypertension, hepatitis C, stubborn leg ulcers — his immune system remained intact. About once a year, he’d allow his methadone doctor to draw blood from a ragged vein in his neck — practically the last vein to his name. His T-cell count stayed high enough to protect him from opportunistic infections. He seemed to be one of the rare, lucky “nonprogressors.”

But after several years of consistently robust T-cell counts, one of the nurse practitioners had a hunch. She asked the methadone doctor not just for a T-cell count but also for a new H.I.V. test.

Lo and behold, it came back negative. The diagnosis had been wrong all along; the H.I.V. test at Rikers had been a false positive. He was promptly discharged from the H.I.V. clinic and sent to the general medical clinic, where I became his doctor.

Mr. S. has the craggy, almost grandfatherly look of someone who has retired from the drug-addled 1980s. His skin is corrugated from years of injecting. His tattoos have faded to a murky bluish gray. His voice is raspy but steady.

I wondered how the misdiagnosis could have persisted for so long — why we chose to explain his vigorous T-cells by classifying him as a nonprogressor, rather than considering that his initial H.I.V. test might have been incorrect.

Was it that we put too much faith in the test’s “objectivity”? Or was it simply that Mr. S. fit the H.I.V. picture too well — Rikers prisoner, drug user, hepatitis C, tattoos — that we never imagined he could be negative?

When we first met, his calves were filleted open from knee to ankle with ulcers in various states of disrepair. He handed me a pagelong list of supplies he needed for the ulcers — saline bottles, gauze wraps, surgical tape, iodine, Silvadene cream, latex gloves, occlusive dressings — and I admit I was a little taken aback. I’d never seen a “druggie” — even an ex-druggie — so organized.

He didn’t fit the picture.

Amazingly, over the years, thanks to his assiduous care, the ulcers gradually healed until there were only thin snaking scars on his calves to mark their sites.

He didn’t fit the picture.

One day, after two decades of taking methadone at an impressively high dose, he abruptly tapered himself off. “I’ve had enough,” he told me bluntly.

He didn’t fit the picture.

When I asked him how he felt about the misdiagnosis of H.I.V., he simply shrugged: “It is what it is.” Perhaps, given all the other things he’d suffered in his life, eight years of carrying a false diagnosis wasn’t the worst thing.

But it made me think about the assumptions that medical professionals — and society in general — make about those who seem to fit a certain picture.

Over the years, Mr. S. shattered myth after myth. But in reality, he didn’t do anything; he simply was who he was. It was society that had to shatter its myths: If we’d observed the conflicting data more carefully in the beginning, if we’d examined our own biases before being so positive in our judgment, he would have been spared this brush with H.I.V. — the stigma, the costly and unnecessary medical care, the drugs and their side effects.

Ultimately, he bequeathed me this lesson about my profession’s penchant for stereotypes and snap judgments.  I just wish he hadn’t had to suffer all those years to convey it.

Dr. Danielle Ofri is an internist in New York City. Her newest book is “Medicine in Translation: Journeys With My Patients.”