New Orleans Over Christmas, an obituary ran in the Wall Street Journal for an unusual doctor, named William Levis, who died in his sleep at 86, having seen patients during the last week of his life. All that was interesting enough, but what caught my attention was the fact that he ran the Hansen’s disease Clinic at New York’s Bellevue Hospital for 25 years.
Still perhaps better known as leprosy, rather than Hansen’s disease, the obituary brought back a lot of memories from more than 25 years ago. Our union represented the federal workers at the National Leprosarium in Louisiana, which in our time was known as the Gillis W. Long Hansen’s disease Center. The center was located hard by the Mississippi River on the site of an old plantation in Carville, best known now as the springboard of James Carville, Bill Clinton’s campaign guru. We had great stewards who knew the federal manual like the back of their hands. My job was driving back and forth up there for a couple days every three or four years to bargain their collective bargaining agreement or its renewal.
The Gillis Long Center, named after a Democratic Louisiana Congressman who championed the facility in his district, had a famous name himself as relative of former governors Huey and Earl Long and senator Russel Long, the state’s dynastic political family in the 20th century. Levis preached to patients despite the stigma that “Leprosy is one of the least contagious of all infectious diseases; he’d never caught it himself. Within a few days of starting multidrug treatment regimen, they wouldn’t be contagious at all. Within two years, they would be cure.”
The stigma was long-standing, before the full recognition became medical commonplace. Our contract carried a clause that defined the health care workers jobs as hazardous duty, because of what had been presumed to be a highly susceptible infection. Workers with long seniority counted on that pay premium. The health service tried to eliminate the extra pay, while our union’s job was holding on as long as possible. Gradually, we bargained that new workers, based on new treatment knowledge, wouldn’t receive the bonus, but senior workers would be red-circled and continue to get the pay. When finally the employer moved to completely end the hazardous pay, working with the Congressman, we were able to get an amendment to the reconciliation bill that continued the premium pay at the Center until the workers retired or separated. The patients council even supported our measure, the only national legislation that Local 100 has ever won!
Part of the reason for the persistent fear of Hansen’s disease was its longstanding scourge as biblical. When my father retired after 38 years with Chevron, never much interested in the weeds of my work, he surprised me by asking if he could go with me the next time I went to Carville, 75 or so miles from New Orleans in the heart of cancer alley. I said sure, why? As a lifetime Sunday school teacher, he had read about leprosy all of his life, and wanted to know more about it. He knew there was a small museum at the Center, unknown to me, that he wanted to visit. We drove up. I went to bargaining, and he walked about the plantation, visited the museum and satisfied his curiosity.
It was my job to represent the workers. We did that very well. We weren’t doctors. We saw people wheeled around or walking in the corridors, but felt no apprehension. Our members advised no special precautions. Our workers were like railroaders holding onto the “full crew” act on cabooses or coal miners and stevedores fighting automation.
The Center closed in 1999, before Levis began running one of the 16 federal clinics that handle Hansen’s and the 200 cases per year now. We know things now about medicine and disease that didn’t exist either 25 years ago or thousands of years. Watching Kennedy’s reordering of public health and the residue of the pandemic conspiracies, I wonder what the medical consensus will be on all of that 25 years from now? Suffering from “premature certainty” about things where we’re clueless and out of our depth can be dangerous and hurt many. My job back then was simple. I’m glad I didn’t pretend otherwise, which keeps me from reading about Levis and feeling shamefaced.