Stanley Stein and The Star

Circulating Now welcomes guest author Elizabeth Schexnyder, curator of the National Hansen’s Disease Museum in Carville, Louisiana, to share the story of The Star magazine, and its editor, from the Stanley Stein Archives. The museum is administered by the Health Resources and Services Administration (HRSA) which, like the National Institutes of Health, is part of the U.S. Department of Health and Human Services whose mission is to enhance the health and well-being of all Americans, by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.

“Hey, do you think anyone would be interested in these old files?” my colleague asked as we surveyed the cobwebby pressroom of The Star on the grounds of the hospital in Carville, Louisiana. It was a sticky August afternoon in 2002. “Otherwise, we can put it all in the dumpster.”

“Oh noooo,” I screamed in my head. I was a newcomer, the freshly hired curator for a recently founded museum. My colleague was an old-timer who had worked for decades with hospital medical staff and patients diagnosed with leprosy.  Internally, I was moaning “this is how it happens,” when invaluable historic documents are lost to the dustbin during an institutional transition and a momentary lapse in judgment.

At the turn of the 20th century, there was no cure for leprosy and the international approach was segregation. Many people in communities around the world suffered forced separations: from family, culture, and community. In 1894 when the Louisiana Leper Home was established on an abandoned plantation on the Mississippi River, there was little treatment and no cure.

In 1917, the federal government passed laws on leprosy care and in 1921 installed the United States Public Health Service Marine Hospital #66 at the site.  Patients trickled in from across the U.S., sent by their respective states where quarantine laws were enacted. By the 1970s, laws were changing, but some patients chose to remain on the hospital grounds. They had found sanctuary.

Leprosy, now called Hansen’s disease, has become an outpatient diagnosis. In 1999, the National Hansen’s Disease Program began downsizing and moving to Baton Rouge, about 20 miles away. So close, but a world apart.

I was hired to be the historian on the spot; to identify, gather and preserve the valuable bits.  I am thankful that I didn’t express my first reaction and shame my friend, who cared deeply about the hospital history but was not trained as a historian. I quickly replied, “I can find room for those files.” We took turns pulling wheely carts with a dozen rusty filing cabinets into the archives. So began my journey with Stanley Stein and The Star, the in-house magazine of the U.S. Public Health Service Hospital, Carville, Louisiana.

When Sidney Levyson arrived in Louisiana for treatment in 1931, he changed his name to Stanley Stein to protect his family in Texas from the stigma of leprosy. At that time, quarantine was permanent. As he struggled to come to terms with his own change in fortune, he noted the morose attitudes of his fellow patients. Stanley vowed to do his part to raise morale. Within two months, he began publishing The Sixty-Six Star (1931–34). The newly minted two-page rag was mostly a “who’s who” of patients and hospital events. The paper folded in 1934 because of Stein’s accelerating blindness. But, by 1941, Stein’s health had stabilized, and The Star was reborn with the mission of “Radiating the Light of Truth on Hansen’s Disease.”

Reporting on the success of new drug treatments of the 1940s became the bread and butter of The Star. Leprosy patients suffer from a variety of symptoms, ranging from mild discoloration of the skin to terrible facial and bodily disfigurement, and loss of fingers and toes. Untreated, leprosy can be a devastating illness.  In his book Alone No Longer, Stein outlined the first use of the “Miracle Drug”, Promin at Carville:

In 1908 German chemists synthesized a compound known as diamino diphenyl sulfone, popularly called DDS.  It wouldn’t be until 1937 that it was tested for antibacterial properties.  If Dr. [Guy] Faget wanted to find out for himself what effect Promin might have on human victims of Hansen’s bacillus, [drug company] Parke-Davis offered him all the Promin he needed for free.   On March 10, 1941, he gave the signal and Dr. Frank McCreary injected six volunteer patients with Promin.  It was a historic occasion, although none of the principals realized it at the time. —Alone No Longer

In the mid-20th century, Hansen’s disease (HD) was becoming the preferred term for leprosy. The term HD derived from Dr. Armauer Hansen, who in 1873 identified Mycobacterium leprae as the bacillus that causes the ailment.  Stein, who was a trained pharmacist, was on the side of science. Campaigning to eradicate the odious word and the stigma of the disease was a driving force behind The Star.

Stanley Stein and Tallulah Bankhead; the actress became his pen pal and supporter, selling Star subscriptions to other celebrities, 1952
Stanley Stein Scrapbook, National Hansen’s Disease Museum Collection #NHDM-6937

The October 1943 issue of The Star reports of the use of the “odious word” leper and bemoans its conflation with U.S. enemies during WWII.
The Star, October 1943

The Star also lobbied for more liberal leave for patients during treatment and less stringent criteria for discharge. As patients were released, The Star followed some of them home to report on their reception and reintegration into community and family life.

The November 1948 cover of The Star shows a newly discharged patient leaving the hospital through the front gate. Coincidentally, the model was “Nick Farrel,”  running the Star presses. He was admitted at a young age from the East Coast and became an early Promin success story. He did indeed return home in 1948 but continued to contribute stories as a “roving ambassador” from out there in discharge-land where he attended committee meetings in Washington, DC to fight for S: 704 the National Leprosy Act and its “Bill of Rights.”

Not only was Promin changing patients’ lives in the U.S., but The Star reporting reached readership overseas. Stanley wrote:

“As a result of our sending the STAR to hospitals abroad …when the patients in the Philippine Islands read about Promin and Diasone in the STAR, they collected money to buy the drugs in the United States.” —Alone No Longer

As the museum’s historian, I was fortunate to get to know Walter Chin, a patient whose time at the hospital overlapped with Stein’s. Walter spent hours sharing with me the details of his life at the hospital as a Chinese American teenager from the Bronx.

One of my favorite stories was about Walter’s volunteer job—reading Stanley’s letters aloud to him in the infirmary. Stein, completely blind, continued to direct each issue of The Star, often from his sickbed, with a little help from his friends.

Another insight into Stanley came from a doctor who provided him with end-of-life care. “What was Stanley’s cause of death?” I asked. “Deafness,” Dr. Robert Hastings explained. I was puzzled.  Then I realized…for Stanley, who lacked sensation over 95% of his body and was blind, becoming deaf meant losing his final connection to his world and his mission.

Stanley’s passion and the mission of The Star stirred the community. The Forty and Eight (40/8) veterans’ organization formed an early relationship with the patients and The Star, donating their first professional printing press in 1943. The 40/8 veterans continued to support The Star by donating a dozen FireKing cabinets to hold the Stanley Stein Archives and the supplies to preserve them.  The 40/8 continue to produce and host new issues of The Star, which is still published once or twice a year (for the latest issue see www.fortyandeight.org, under the tab “resources”).

In 2011, I formed a partnership with Louisiana State University Health Services librarians in New Orleans to create digital copies of The Star.  A complete run from 1941–2000 is accessible on the Louisiana Digital Library. This brings The Star to a remote audience and simplifies my one-person research program.

The next logical step is to digitize the archives, too, creating a full-circle experience for researchers. In addition to narratives, editorials, and photographs, the archives contain patient-produced cartoons. “The Promin Salute,” drawn by Johnny Harmon (AKA Harris), pictures patients walking through the hospital hallways with their arms bent at the elbow and held aloft, marking them as intravenous receivers of Promin. A salute to progress as well as an insiders’ joke, directly from the patient’s proverbial mouth.

Stanley’s work advocating for patients worldwide was in the tradition of the “fighting editor.” His obituary in The Star (January/February 1968) provides a list of his accomplishments; sixteen bullet points starting with “removal of the barbed wire from the Carville fences” and ending with “Transformation of The Star…into a world-wide educational influence.”

Stanley’s life and work is a testament to what one person can aspire to, and accomplish, while separated from family, culture, and community. He was physically challenged with a serious illness, but chose life and advocacy, focusing on how he could serve. The least we can do is preserve the documents that give witness to his heroic work.