The 66 Star — “Radiating the Light of Truth on Hansen’s disease” — was the patient publication of the national leprosarium in Carville, Louisiana, known as United States Public Health Service Marine Hospital 66. The 66 Star ceased publication in 1934 after its founder and publisher, “Stanley Stein,” went blind.

Stanley Stein’s real name was Sidney Maurice Levyson. He grew up in the tiny German-American town of Boerne, Texas (pronounced “Bernie”), was educated as a pharmacist, was diagnosed with leprosy at 21, and for years was secretly treated by a San Antonio physician. 

At the time he contracted his condition, Hansen’s disease, or leprosy, was an incurable, almost entirely untreatable, disfiguring, hideously painful condition in which patients often lingered between life and death for decades. When the doctor treating Levyson in San Antonio died, Levyson’s condition deteriorated. On the advice of his rabbi, he took himself to a leading specialist in tropical diseases in New York City. There Levyson was immediately diagnosed a leper, reported to the health authorities per US quarantine law, and was transported under guard from New York to Marine Hospital 66, the national leprosarium, where he would remain a patient for the rest of his life.

Sidney Maurice Levyson became Stanley Stein out of a justifiable concern for the effect the stigma of leprosy would have on his family back in Boerne. Stein and his colleagues on The 66 Star would battle misapprehensions about the ailment, fighting for better medical treatments and to eliminate involuntary confinement of people suffering from Hansen’s disease. They lobbied ceaselessly on behalf of the Carville patients to receive visitors, send mail, vote, and use the telephone. Editing and publishing his newspaper, Stein spent most of his life struggling to influence what Australian aborigines call “bugarrigarra” — the forces that shape cultural customs and practices, and to destroy the historical prejudice around Hansen’s disease, which, in Stein’s view, derived principally from Biblical sources, chiefly the book of Leviticus, which devotes two substantial chapters to the diagnosis and ritual treatment of the illness. 

The Hebrew word tzara’at, usually translated into English as leprosy, may have included modern Hansen’s disease, although most medical historians believe it did not. Tzara’at certainly did include an indeterminate number of other skin conditions which resemble modern Hansen’s in some of their various forms of presentation. But according to Timothy Miller and John Nesbitt, authors of Walking Corpses: Leprosy in Byzantium and the Medieval West, Hansen’s disease (modern leprosy) was known as the “Elephant Disease” or “elephantiasis” in the ancient world. Even more confusingly, ancient Elephant Disease is not the same as the identically named modern elephantiasis, which is caused by mosquito-borne parasites of the genus Filaria.

Biblical leprosy was also known by the Greek word lepra, which meant “a scale like that of a snake” or “a flake of human skin,” and which is thought by medical historians today to have included psoriasis, eczema, favus, dermatophyte infections, nummular dermatitis, atopic dermatitis, pityriasis rosea, and crusted scabies. Stein was not fighting leprosy; he was fighting the myth, the bugarrigarra, the “common knowledge” we share about Hansen’s disease. In a prefiguration of crusaders like Karen Silkwood and Erin Brockovich, Stein and The 66 Star made a lifetime effort to update public awareness about leprosy — an effort complicated by the variable presentations of Hansen’s disease.

Biblical lepers were usually said to be cleansed — rarely “healed”; but when healed, a Biblical leper still needed to be cleansed. A plague was viewed as an uncleanness, inflicted by God’s express will, not by natural causes like other diseases, and therefore it was to be managed by priests, not doctors. Moses’s brother Aaron and Aaron’s wife Miriam were both stricken with leprosy by God for speaking against Moses after he married a Cushite. King Uzziah’s leprosy, as Aaron’s and Miriam’s, was punishment for a particular sin — in the King’s case, burning incense in the temple and thereby usurping a priestly role. Treatments logically focused on ritual impurity. 

Through the 1930s the principal treatment for leprosy was an injectable form of Chaulmoogra oil, which had horrible side effects and — while it may’ve slowed the disease’s progress — was chiefly a palliative or a placebo. Chaulmoogra was not a cure; there was no cure. Convincing the public it was unnecessary to separate Hansen’s patients — lepers — from their families and confine them in colonies would prove impossible, despite the urgings of many physicians experienced in treating the disease. 

In 1944 that all changed. The first effective treatment in history for Hansen’s disease became available. “Promin” — an injectable “sulphone” drug — stopped the progress of Hansen’s disease, although it could do nothing for damage, like Stein’s blindness, already done.

The effectively treated Stein resurrected The 66 Star (without his sight), renamed it simply The Star, and began to rally the “Hansen’s disease community” worldwide, bringing news of Promin, as well as excited reports of the remission of symptoms and, before long, the elimination of the Mycoberium leprae from the bodies of Hansen’s patients. The Star brought new hope to Hansen’s disease sufferers confined to leper colonies around the world. In Culion, the world’s largest leper colony, located in the Philippines, patients pooled their money to buy supplies of the drug. In India, England, Africa, and Hawaii, the afflicted drew new hope and strength with the advent of the first effective therapy for this mythic scourge. 

Stein hated the word leper, and wanted to replace it in every instance with Hansen’s disease. People in media who used the term were liable to receive a rebuke from The Star’s editor, on the periodical’s letterhead. Stein wanted, in his commonsense way, to cut through the bullshit around leprosy and get to the truth about Hansen’s disease. Stein opposed involuntary quarantine for lepers, insisting it was unnecessary. He lobbied successfully to remove the three strands of barbed wire that topped the Carville hospital’s fence. He wanted to eliminate the prison atmosphere of the hospital, and fought for liberalized “patient rights,” such as the right to vote, to send and receive mail, to have visitors.

“THAT ODIOUS WORD AGAIN”
by Stanley Stein 

“Although the National Association of Broadcasters promised help in eliminating the use of the word leper on the air except by physicians and scientists, the word is still used by some commentators when referring to Germany and Japan. This makes the word doubly odious for those of us who are unfortunately afflicted with Hansen’s disease. On August 10’th broadcasting for the Victory Service League over CBS, John B Kennedy said, ‘The Japanese, like the Germans, bragged that their destiny was to be lords of creation. Like the Germans, the Japanese will have to be taught for keeps, that their doom is not to be Lords of Creation, but the lepers of mankind.’

“H.V. Kaltenborn on Dec 4 used the word, giving it the same objectionable connotation. It is a tremendous task to divorce this word from its historical associations and the commentators who use it do so because it is colorful, and it has meaning to which the mind turns unconsciously; certainly we understand that they do not do it deliberately to offend. It is, however, a bitter dose for American citizens, particularly those in our group who have served in the armed forces, to be so classified with Japs and Nazis.

“The Star will continue to challenge the use of this odious word.”

There can be no doubt that Stanley Stein was a royal pain in the ass for the hospital staff and the public health service administration. Staff were local people, long-term hospital employees, and they received 25 percent “danger pay” for working with Hansen’s patients. Stein said he didn’t mind how much staff was paid but insisted that it shouldn’t be called “danger pay” when there was no danger. This made him unpopular for a time with the staff. Stein’s relentless advocacy after World War II helped increase The Star’s circulation to nearly 60,000 copies. Many of the lepers at Carville were veterans, and Stein’s polemics soon caught the attention of patriotic veterans’ organizations like the American Legion, whose honor society — the “Forty and Eight” — donated The Star’s first real printing press. Stein also became friends with the actress Tallulah Bankhead and enlisted her to help inform the world (and its legislators) that Hansen’s disease was treatable, and far less infectious than STDs or tuberculosis.

Sidney Maurice Levyson, a.k.a. Stanley Stein, died in 1967. In large part due to his efforts, the United States would abolish laws requiring the forced confinement of Hansen’s disease patients two years after Stein’s passing, in 1969. One of his doctors, when asked what Stein had died of, replied, “deafness.” Stein had been blind since 1934. He later lost all feeling in his hands and what remained of his body. When he went deaf, Stein’s last contact with the physical world was severed forever. 

We are entitled to believe that, by then, Stein knew he’d won. He’d organized his fellows, stood up to the bullies, spoke the truth as he saw it, and it had kept him alive. When it ended at last, with the destruction of his auditory nerve, Stanley Stein died.

Stein’s battle was, in many ways, Quixotic. Renaming leprosy for the Norwegian microbiologist Gerhard Henrik Armauer Hansen, who discovered Mycobacterium leprae, was an effort to sever the disease from the historical specter of a curse. Stein’s stated purpose, and much of what he urged, has now become new dogma. Numerous superficial medical advice websites tell us that Hansen’s disease is “easily curable,” hardly infectious, no hazard to the public. 

Well. Hansen’s is certainly not “easily curable,” unless we think one or two years of “MDT” (multidrug therapy) is easy. In India, where the World Health Organization declared victory over Hansen’s disease in 2005, the disease is making a comeback, casting doubt on the new dogma, and illuminating our lingering ignorance about this mysterious disease. “In 2018, to reduce transmission, the WHO initiated a single dose therapy (rifampicin) for the close social and household contacts of leprosy patients,” a writer for Johns Hopkins’s Global Health NOW initiative reported, “but cases of rifampicin resistance have been recorded since 2009, says [Indian researcher] Sengupta, and this is being overlooked.”

While the World Health Organization declared victory over Hansen’s disease in India during 2005, there are now 800 leprosaria operating, and the patient population is said to be increasing rapidly. “Some former patients who had multidrug therapy long ago are now facing relapses, while other patients are not responding to the regular drugs,” Sengupta says. Yet another obstacle preventing the disease’s elimination is that M. leprae exists not only in people but in the environment, according to a 2016 article in the Indian Journal of Dermatology, Venereology and Leprology, “Clusters of cases are being detected near ponds used by communities for washing, bathing, and drinking.”

 As our understanding of a disease changes, our beliefs and expectations may affect its appearance, progress, and outcome. Levitical law and its prescriptions may not be as irrational or as easily dismissed as we may assume; the idea that inanimate objects may become leprous and spread the disease is not so unreasonable after all. As with Hansen’s disease as reported in India, Biblical leprosy was/is not confined to human beings; clothing and houses may become infected and must be diagnosed and treated by a Levite.

The Law Concerning Leprous Garments

 “Also, if a garment has a leprous plague in it, whether it is a woolen garment or a linen garment,  whether it is in the warp or woof of linen or wool, whether in leather or in anything made of leather,  and if the plague is greenish or reddish in the garment or in the leather, whether in the warp or in the woof, or in anything made of leather, it is a leprous plague and shall be shown to the priest.  The priest shall examine the plague and isolate that which has the plague for seven days. And he shall examine the plague on the seventh day. If the plague has spread in the garment, either in the warp or in the woof, in the leather or in anything made of leather, the plague is an active leprosy. It is unclean.  He shall therefore burn that garment in which is the plague, whether warp or woof, in wool or in linen, or anything of leather, for it is an active leprosy; the garment shall be burned in the fire.” – NKJV

Hansen’s disease is believed to be caused by Mycobacterium leprae, a virus “morphologically indistinguishable” from its sibling virus Mycobacterium tuberculosis. Both TB and Hansen’s disease present symptoms in similar forms. Hansen’s has “tuberculoid” and “lepromatous” forms, and many intermediate presentations. TB, usually thought of as a lung disease, has “extrapulmonary” form(s) and often produces skin lesions and nerve damage, though both diseases are difficult to distinguish from a third disease, sarcoidosis. Autoimmune disorders, in their myriad stages and presentations, cannot with certainty be distinguished from each other, nor from a host of other autoimmune diseases. We have here a cluster of diseases, easily mistaken for one another, which even today are not always distinguishable, diseases that remit and recur for reasons not fully understood. Diseases which may or may not be “easily curable” with multidrug therapies. Diseases which may be dramatically affected by our ways of understanding them.

Hansen’s disease today is considered mildly infectious, and no means of transmission from person to person has ever been detected. Over its history, we have been told authoritatively by our foremost experts: Hansen’s is hereditary; Hansen’s is the fourth stage of syphilis; Hansen’s is infectious but not contagious, or possibly contagious but not infectious (in the technical, 19th-century senses of those terms). Hansen’s is caused by black bile, an excess of the melancholic humor. Hansen’s is caused by poverty. By poor hygiene. Hanson’s is caused by Mycobacterium leprae. 

From Byzantine to medieval times up until today, many Hansen’s sufferers — unable to work, shunned, sometimes hunted and exterminated like vermin — have sought, begged, or, if they’ve been able, paid for shelter in lazarettos and leper colonies. Even the combative Stanley Stein wouldn’t say leprosaria weren’t harmful — he just didn’t want to see barbed wire topping his fence.

Not everyone shuns lepers. Many Catholic religious orders regarded caring for lepers a special charism; “the Leper Knights” (Order of Saints Maurice and Lazarus) fought Saracens in the First Crusade when not operating a leper colony outside the walls of Jerusalem. The Franciscan order cared for lepers from Crete to Vietnam, and their founder, St. Francis of Assisi, was said to be a leper himself, as was Father Damien (now St. Damien of Molokai), who famously developed leprosy while caring for lepers in Hawaii and died of it. Oddly, Damien had a jealous imitator priest who pretended to have leprosy but didn’t, and who tried but failed to steal the valor of his rival.

One thing we know for sure is that when the US Public Health service abolished involuntary segregation for Hanson’s disease, they did not foreclose the right to reimpose quarantine for Hansen’s, nor any other disease which, in their view, warrants it. Defining the boundaries of our humanity by cutting off groups of people, often those who suffer terribly, appears to be a more or less universal desire and practice in all cultures. This is true whether the affliction we scorn is understood as a curse from the Gods or as the product of a bacillus. By shunning them, we seek to underline our own humanity, when in fact we do the opposite.