"I challenge you to find any one of my patients who has not been treated like a drug addict," says Dr. Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins. "There are only so many times you can listen to those stories before you have to do something about it."
So she did. In February, Hopkins opened a day hospital for sickle cell patients who need immediate pain medication when they feel overwhelming crises coming on. The staff knows their needs and treats them gently - often better than the suspicious staffs of emergency rooms.
Sickle cell is marked by periods of intense pain that can only be eased by massive does of narcotics - and often require hospitalization. Sickle cell is predominant among African-Americans, who are often viewed skeptically when they arrive in emergency rooms asking for drugs, Lanzkron said.
In Hopkins' small day hospital - open from 8 a.m. to 4 p.m. on weekdays - there are heated chairs and televisions in a space large enough to accommodate five patients.
"There is no objective measure of pain," Lanzkron said, so she and her staff have only the patients' word to go by. When they were babies, sickle cell patients would often display swollen feet and hands. As adults, that doesn't happen.
The facility is funded through a partnership with a Medicaid HMO, Priority Partners, which wants to cut down on ER visits and eliminate or at least shorten hospital stays. In its first month, the number of sickle cell pain visits to Hopkins' ER was cut in half.
Although treatment for children with sickle cell is excellent, many victims are now living well beyond their teens and into their 40s, Lanzkron says. When they get to adulthood, "the entire program falls apart."
Lanzkron, who said she and her colleagues are probably among the highest prescribers of narcotics in the state, said she wishes there were better treatments.
"We throw narcotics at this," she said. "We're just masking the pain. It's a bad therapy, but it's all we've got."