By Kiera Butler
February 12, 2009, was supposed to be a big day for Carlton Haywood Jr.: The newly minted Johns Hopkins professor was set to travel from Baltimore to New York City to make a presentation at an important medical meeting. But the night before he left, a searing pain started to surge through his arms and soon spread to his legs. The next morning, when he boarded the train, his whole body felt like it was on fire. By the time he reached Penn Station, he could barely make it to the emergency room.
The pain was caused by Haywood’s sickle-cell disease, a genetic condition in which misshapen red blood cells build up in the blood vessels and cause infections, strokes, and excruciating episodes of pain. Having lived with sickle cell for 39 years and studied it as a bioethicist, Haywood knew the treatment he needed to stop the episode, so he requested a specific combination of medications. The hematologist, however, refused, implying that Haywood didn’t know what he was talking about. Haywood wound up missing the meeting—and was in the hospital for a week.
For the 100,000 Americans with sickle cell—it’s the most common life-shortening genetic disease in the United States—insults like that are routine. “We know what works best for us and what does not work so well for us,” Haywood says. “But doctors often don’t listen.” His research has found that when sickle-cell patients ask for medication—especially opioids to control their pain—they are routinely dismissed as pill seekers, even though they are no more likely to be addicted to painkillers than the general population. Sickle-cell patients in acute pain also face longer ER waits than other patients in acute pain.
So what’s unique about sickle-cell patients? Well, about 90 percent are African American. (The trait is thought to have originated in Africa as an adaptive response to malaria.) Many researchers believe that racial discrimination plays a major role in the care that sickle-cell patients get.