The legacy of Carville: a history of the last leprosarium in the U.S.
|Abstract:||The purpose was to document the historical, societal, and medical contributions of Carville, La., the last leprosarium in the U.S. (1894-1999), to Hansen's Disease (leprosy). Non-experimental methods were based on Garraghan's historical analysis. Primary archival data was retrieved from Carville's Museum and university libraries. Events were analyzed, validated, rank ordered, and chronologized in 10year increments. Major events at this U.S. Public Health Service Hospital were a "cure" for Hansen's disease, quarantine law enforcement, and a world renowned medical, research, treatment, and rehabilitation center. The result was a historical record of Carville's unique contributions to Hansen's disease and society worldwide.|
Universities and colleges
Universities and colleges (Social aspects)
University and college libraries (Social aspects)
Quarantine (Social aspects)
High-definition television (Social aspects)
Public health (Social aspects)
Leprosy (Social aspects)
Hernandez, Barbara Lorraine Michiels
|Publication:||Name: American Journal of Health Studies Publisher: American Journal of Health Studies Audience: Professional Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2009 American Journal of Health Studies ISSN: 1090-0500|
|Issue:||Date: Spring, 2009 Source Volume: 24 Source Issue: 2|
|Topic:||Event Code: 290 Public affairs Computer Subject: High-definition television|
|Product:||Product Code: 8220000 Colleges & Universities; 8232000 Academic Libraries; 8000120 Public Health Care; 9005200 Health Programs-Total Govt; 9105200 Health Programs NAICS Code: 61131 Colleges, Universities, and Professional Schools; 51412 Libraries and Archives; 62 Health Care and Social Assistance; 923 Administration of Human Resource Programs; 92312 Administration of Public Health Programs SIC Code: 8221 Colleges and universities; 8231 Libraries|
|Organization:||Government Agency: United States. Congress; United States. National Library of Medicine; Texas. Department of State Health Services; United States. Public Health Service Organization: Lamar University; World Health Organization|
|Geographic:||Geographic Scope: New York Geographic Code: 1U2NY New York|
"Leprosy" or "Hansen's Disease" (the proper terminology) played a role in the history of disease and illness worldwide. From biblical times until today, this disease is associated with stigma. If not treated, it damages nerves, ulcerates skin, and dissolves bones. The patient's disfigured limbs and the identity of "uncleanliness" with the disease encouraged whispers in society for many years (Zappo, 1933). Fear, lack of knowledge, and the debilitating effects on humans made it controversial and the subject of misinformation (Brody, 1974; Cross, 2006; Levison, 2003; White, 2003). The acute signs of those infected by Hansen's disease (HD) caused it to be considered contagious, necessitating the isolation of the victims. They were forcibly isolated to "leprosariums", walked on one side of the road, and rang warning bells (Brody; Levison; White).
The disease was introduced in America in the 18th century by the Spanish conquerors, the slave trade, and French speaking colonists (A Medley of Cultures, n.d.; Nigro, 1921; Trautman, 1984; White, 2003). "In the late 1800's, isolation of leprosy patients became public health policy in the United States (U. S.). The discovery of the bacillus that causes leprosy, Mycobacterium Leprae, by Gerhard Armauer Hansen was in 1873 and the presence of the disease in the U.S. as well as European territories and colonies seemed to have contributed to the spawning of a new leprosarium movement" (White, p. 2).
Hansen's disease was a major concern in endemic Louisiana. From 1894-1950's, people diagnosed with HD in the United States were forcibly isolated from their families near Baton Rouge, Louisiana. The Gillis W. Long Hansen's Disease Center, (formerly known as Carville), served as a confinement center and a home for HD patients until 1999. In the beginning, Carville was a dilapidated, old plantation house with crude conditions and forced isolation of the HD patients, due to the quarantine law (Elwood, 1996; Furman, 1984; Hughes, Vertonneau, & Enna, 1968; White, 2003). Carville, from these simplistic beginnings, became one of the most sophisticated medical, research, and rehabilitation centers in the world for HD treatment (A Medley of Cultures, n.d.; National Library of Medicine, 2004; White; Wolf, 2000; Zewe, 1998).
The "cure" or discovery of Promin (Dapsone) for HD was discovered in 1941 at Carville, La. (Martin, 1950; McDougall, 1979; Parascondola, 1994). The multi-drug therapy (MDT) of dapsone, rifampicin and clofazimine was discovered in 1981. This was possible through extensive research at Carville (Britton, 1993; World Health Organization [WHO], 1994, 2008). The hospital relocated to Baton Rouge in 1999 when MDT was demonstrated as an effective cure (International Leprosy Congress, 1998; Kern, 2003; Local Legacies, 2003; USDHHS, 2007).
The disease was under control due to the effectiveness of MDT and most patients and newly diagnosed cases in the U.S are now treated on an outpatient basis. Hansen's disease is still, however, a significant problem in some parts of the world where treatments are not available (Britton, 1993; White, 2003; Wolf, 2000; WHO, 2008; Zewe, 1998). The history of "Carville" from its humble beginnings to its status as the world known Center for HD's care, research, rehabilitation, training, and education is one of the greatest contributions of modern time (Levison, 2003; National Library of Medicine, 2004; WHO, 1994; Zewe).
The purpose of the investigation was to document a non-experimental, written history of the specific social, medical, and historical legacy of Carville, La., the last leprosarium in the U.S. from 1894-1999 using primary historical sources. This U.S. Public Health Service Hospital closed in 1999. A complete written history of Carville does not exist, but patient interviews, short summaries, and a documentary film exists (Elwood, 1994, 1996; Farren, 1996; Gaudet, 2004; Wilhelm & Squires, 2008). The historical analysis included discriminations due to the "quarantine" law (Elwood, 1996; Furman, 1984; White, 2003). The result was a written documentation that disseminated the unique worldwide events and cure relative to HD that occurred at Carville from 1894-1999 (National Library of Medicine, 2004; WHO, 1994; Zewe, 1998).
METHODOLOGY AND PROCEDURE
This is a written historical methodology. Events were validated with 3 sources and classified as historical, social, and medical/rehabilitative by the researchers. These validated and classified events were chronologized into 10 year increments from 1894-1999. The written events were then analyzed, scored, and rank ordered based on Garraghan's historical methodology (1946). The first stage retrieved primary sources from archival data at the National Hansen's Disease Museum and university libraries. Primary sources included narratives, literary sources, diplomatic sources (legal documents & laws), images, newspaper accounts, government documents, and social documents. This method consisted of the techniques and guidelines used by historians where primary sources are researched to help write history (Garraghan; 1946). All events preserved in some form agreeing with historical dialogue or that were not invalidated constituted the historical record.
Each event was analyzed on a 1-5 scale (5 = the highest score) for each of the 3 historical method analyses: external criticism, internal criticism, and synthesis (Garraghan, 1946; McCullagh, 1984). External criticism was authenticity and provenance (1 score for each) using criteria based on (1) when, (2) where (3) whom (authorship) (4) analysis from pre-existing material and (5) original form (integrity). Internal criticism (2.5 score for each) was historical reliability (eyewitness and oral evidence) based on the evidential value (credibility). Synthesis (3.3 score for each) included historical reasoning based on the argument to the best explanation (observable data), statistical inference, (hypothesis of greater explanatory scope and power) and argument from analogy (the plausible hypothesis). Based on the total scores (15 maximum) from external and internal criticism, and synthesis, each event was rank ordered (Garraghan). The events ranked and scored >10 were included in the written history in chronological order with classifications. The result was a written documentation that disseminated the unique history relative to HD and Carville from 1894-1999 (National Library of Medicine, 2004; WHO, 1994).
1894 to 1904
In 1894, authorities became aware that one of the physicians in Louisiana was running a boarding house for patients of Hansen's disease. There were about 8 patients who lived in a so-called 'Pest House' in New Orleans (The Leper Board, 1894). As the patient numbers increased, in 1878, the Board of Health of New Orleans became alarmed over the horrible conditions (A Medley of Cultures, n.d.; Nigro, 1921; White, 2003). Dr. Isadore Dyer from Tulane University persuaded the Legislature of Louisiana to pass a bill to create a Louisiana Leper Home for patients (Dyer, 1902; Stein & Blockman, 1963; Nigro, 1921).
In 1894, seven patients were transported from New Orleans on a coal barge because no wagon driver would transport the patients to the Old Indian Camp Plantation House (see Figure 1). The patients lived in the old slave cabins of the abandoned sugarcane plantation in Louisiana, at Iberville Parish (The Leper Board, 1984). The new home was devoid of sanitation and dilapidated, with swamp conditions and wilderness. A resident doctor was assigned but resigned after one year of service. Patients were fending for themselves in isolation for about 2 years (Marshall, n.d; Paraschandola, 1998; Stein & Blockman, 1963).
[FIGURE 1 OMITTED]
In 1896, the Daughters of Charity of St. Vincent de Paul were approached by Dr. Isadore Dyer and the Board of Control to treat the patients at the "Louisiana Leper Home". Dr. Dyer and Mother Marianna contract an agreement for the nursing and the household management. Four sisters volunteered and over time, 120 nuns came to Carville. They came when HD was feared, transmission was unidentified, and there were no effective treatments for patients (Daughters of Charity Annals, 1901; Elwood, 1996; Hughes, 1968). Controversy continued over the site of the leprosarium. The "Louisiana Leper Home" was kept at its present location, though not adequately funded (Daughters of Charity Annals, 1901; Dyer, 1902; Eldwood, 1994, 1996; Stein & Blockman, 1963; USDHHS, 2007).
[FIGURE 2 OMITTED]
Little was done to alleviate or isolate the patients in initial days of the introduction of "leprosy" in America (Nigro, 1921). Public apathy and ignorance permitted the disease to remain unchecked, undiagnosed, and the numbers increased (Fairchild, 2004; Paraschandola, 2003; White, 2003). Public ignorance towards Hansen's disease and lack of information were major factors for the fear and shunning of the disease.
Patients that were diagnosed and reported to the Board of Control in the U.S. were committed by court order to go to the "Louisiana Leper Home" by the quarantine law. Some came in chains, and others in hearses, box cars, or carts (see Figure 2), usually in the dark of night fearing a mob would get them, because they were diagnosed with HD (A Medley of Cultures, n.d.; National Library of Medicine, 2004; White, 2003; Wolf, 2000; Zewe, 1998). Patients were legally and forcefully confined here. They were advised to change names to protect their families from social stigma and many took an assumed name. The "Louisiana Leper Home" was a place of no return (Elwood, 1994; Fairchild, 2006; Lechtrek, 2005; Stein & Blockman, 1963; White, 2003; Wolf, 2000). Patients buried in the Carville cemetery "under the pecan trees" were given patient numbers and dates on grave markers, but controversy existed on the names on the markers, real patient's names, and patient legers (Gaudet, 2004; Elwood, 1994).
MEDICAL AND REHABILITATIVE ASPECTS
The disease is caused by Mycobacterium Leprae (Anderson, 2007; Nigro, 1921; Trautman, 1984; White, 2003). In the early years (1894-1902) there were no sophisticated drugs and few medical treatments available. Chaulmoogra oil was used and caused nausea and "leper fever". Other drugs were added such as strychnine sulphate and chlorate of potash (Elwood, 1994; Fairchild, 2004; Scillicorn, 2006; White, 2003).
1905 to 1915
In December of 1905, the Louisiana State Board purchased the Carville property and contents. The state became the first to fund custodial care for HD patients. From 1905 to 1916, new construction included patient cottages, a clinic, dining hall, laboratory, operating room, and a central steam plant (Elwood, 1994; Fairchild, 2006; Nigro, 1921; USDHHS, 2007). A unique architectural feature was the building of covered walkways that connected the patients' bungalows and buildings for wheelchair accessibility (Elwood, 1994; Fairchild, 2006; USDHHS, 2007). A chapel was built with donations from Dr. Dyer and others, where the patients gathered for mass. The period from 1905-1916 included massive construction and increased state funding from the board (Fairchild; Gaudet, 1998; USDHHS, 2007).
Because of the quarantine law and forcible confinement, many rules enforced were established for patients. They were denied many human rights in the name of preventing the spread of the disease. Patients were segregated by gender for fear of pregnancies and heredity transmission of the disease. They were jailed ("detention center") if they escaped or committed a crime. Patients could not vote, marry, associate, or live with the opposite sex. Outgoing mail was sterilized and there was no telephone access. Patients could not own cars. Children born to patients (diagnosed with HD) were removed to live with relatives or foster families. Besides losing human rights, the loneliness and self-aversion were consuming patients (Elwood, 1994; Fessler, 2008; Furman, 1984; Hughes et al., 1968; Nash, 2007; USDHHS, 2007; White, 2003).
MEDICAL AND REHABILITATIVE ASPECTS
Experiments were carried out from 1905-1915 to find a cure for the disease. In addition to chaulmoogra oil, a bath in 105[degrees] F water was given. An experimental therapy was normal horse serum (.5 cc once a week). Macules and ulcers healed with no unpleasant after effects. Patients were essentially "guinea pigs" for new treatments through the years at Carville (Elwood, 1994; Trautman, 1984; White 2003).
1916 to 1926
Carville was run by the U.S. Public Health Service starting in 1921 (Martin, 1950). When admitted to Carville, patients were still encouraged to change their names to prevent embarrassment to their families. At a National Leprosarium, specific rules were enforced. Patients were forbidden some rights until the 1950's and beyond. Amidst all of the confinement and regulations, Carville became a unique society for patients who stayed long term (Elwood, 1994, 1996; Farren, 1996; Fairchild, 2006; Wilhelm & Squires, 2008).
"Leprosy" was not peculiar to the state of Louisiana, but other states sent citizens to Carville. These states paid $5000 for every patient admitted to the leprosarium. In 1917, a bill was introduced in congress to provide for a national leprosarium, mainly due to testimony before the U.S. Congress by patient John Early. The "Louisiana Leper Home" property was purchased from the State of Louisiana on January 3rd, 1921. The United States Public Health Service took operational control and the name changed to the United States Marine Hospital Number 66. Also at this time, Dr. Isadore Dyer, founder of Carville, died in 1920 (Elwood, 1994; USDHHS, 2007; White, 2003).
The isolation and separate living quarters of patients from the staff remained during the 20th century. Patients could not leave. Barbed wire fending surrounded the dwelling, a guardhouse was staffed, and the residents segregated. A hedge near the Sacred Heart Chapel was a line that patients were forbidden to cross. However, the notorious "hole in the fence" allowed patients short escapes to the outside world (Elwood, 1994, 1996; Fairchild, 2004; Frantz, 1992; Gaudet, 2004; Ramirez, 2007; White, 2003).
Patients were not allowed to use public buses or trains or marry. Family visits were monitored with no touching allowed and limited for the patients. Day passes were allowed for patients with families in Louisiana, Texas, and Mississippi. Patients from other states could not leave. Sociologically, patients were isolated and this brought restraints on their lifestyles (Elwood, 1996; Fairchild, 2003; Ramirez, 2007; Stein & Blockman, 1963; White, 2003).
Due to lack of knowledge, outside people refused to be anywhere near the HD patients. The rejection was not the disease, but the disfigurement and ulcerations. This made the patients different from the rest of the population (British Broadcasting Center, 2003; Cross, 2006; Ramirez, 2007; Sasakawa, 2004; White, 2003).
MEDICAL AND REHABILITATIVE ASPECTS
Sister Hillary Ross was assigned to the Carville pharmacy during 1922-1928. Sister Ross and Dr. George Fife, a U.S. Public Health Service Officer, established a laboratory for drug testing (Elwood, 1996, Fairchild, 2006; Frantz, 1992). Discharge from Carville during pre sulfone days required twelve bacteriologically negative exams on a monthly basis. Some patients often started over again if the 12th exam was positive. Cocoa and flavored syrups were used to help disguise the taste of the chaulmoogra oil (Parascandola, 2003; Trautman, 1984; White, 2003).
1927 to 1937
During the late 1930's the Public Health Services rebuilt the campus except for staff residences and the main house. By the end of 1930's era, Carville was enormously funded and rebuilt and was a major research HD institute (Frantz, 1992; Trautman, 1984; Stein et al., 1963).
A patient named Stanley Stein, also known as Carville's crusader, published The Star newspaper in 1931. This was for patient advocacy and public education about Hansen's disease. The Star provided some patients with part-time, paid employment. It was an icon and a patient's rights advocate. It was the official voice of the patients, provided education about HD, and a notable historical record of Carville (Martin, 1950; Stein & Blockman, 1963; Ramirez, 2007; Trautman, 1968).
An amenity at Carville during this time was a lake with paddleboats. There was a patient Canteen for buying snacks and cold drinks that became the center of social life. Daily life at Carville was different during different eras, depending on the available treatments, administrative policies, and the socialization opportunities. For younger people, their experience seemed more positive, if there were other young people here (Applebome, 1989; Eldwood, 1994, 1996; White, 2003).
MEDICAL AND REHABILITATIVE ASPECT
Intensified studies on chaulmoogra oil gave way to the injections of drugs as proteins, glandular extracts, serums, antitoxins, plant extracts, and vaccinations. Physicians tried heat treatment, X- rays, fever therapy, fat free diets, milk injections, and blood plasma transfusions. Reconstructive surgeries were done. A resident dentist, ophthalmologist, and consulting orthopedist were assigned. A physical therapy clinic was organized for the damaged limbs. Work began on rod shaped Hansen's Bacillus in 1931 (Creighton, 1961; Elwood, 1994; Hughes et al., 1968).
1938 to 1948
Major events occurred during this period at Carville. On March 10th 1941, the "Miracle at Carville" occurred quietly when two patients (Betty Martin and her husband) received injections of the sulfone drug Promine (Martin, 1950; McDougall, 1979; Parascondola, 1994). After the first volunteers received treatment with promine, dramatic improvements were seen, though slow. Early cases recovered within six months and advanced cases improved in 2-3 years. Doctors at Carville and Daughters of Charity regulated the doses of promine and introduced other sulfone drugs (diasone & promiziole). For the first time in history, some patients were cured and were discharged in large numbers from Carville (Applebome, 1989; Elwood, 1994; Frantz, 1992; Ramirez, 2007; Stein, 1943; White, 2003).
The era from the late 1930's to 1946 brought hope to patients as the "leprosy" (as some still called it) came under control and many patients were discharged. Patients were enthusiastic and wanted to be cured and released. This also marked the time that non-diagnosed spouses of patients were allowed to live at Carville (Braggs, 1995; Fairchild, 2006; Hughes et al., 1968; White 2003).
A significant event that took place during this period was the reinstatement of the right to vote for the patients. Patient's rights advocacy continued because of the established Patients Federation and The Star (Applebome, 1989; Elwood, 1994; Frantz, 1992; Ramirez, 2007; The Star, 1943; White, 2003). Patients' were disturbed that the "mentally ill" patients were housed in the jail and were not receiving regular medical treatment. The Star published an article about this entitled Carville's Bill of Wrongs (Stein, 1944).
MEDICAL AND REHABILITATIVE ASPECT
The use of sulfone drugs for the control of HD were the major medical events in the history of Carville. Guy Henry Faget, M.D., director, and his staff demonstrated the efficacy of sulfone drugs as promine, dapsone, and promizole. Reconstructive surgery and physical therapy was part of the rehabilitation process (Fairchild, 2006; Hughes et al., 1968; USDHHS 2007).
During this period, many patients viewed their life at Carville as not "normal". Patients wanted a separate place to live alone or with a partner. Those who were single or seeing each other were married secretly. Some desired separate cottages and kitchens for their privacy. Patients built their own cottages and the number of cottages doubled (Fairchild, 2006; Parascandola, 1994; Kellersberger, 1954; USDHHS, 2007; White 2003). Betty Martin (pseudonym), one of the patients to receive the first promine drug, wrote an autobiography entitled "Miracle at Carville" (1950) that became a U.S. best seller.
During the war time period, patients viewed their lives as confinement. They were lonely and secret affairs and relationships continued. The effects of the new medicine promine were promising. Rehabilitation and occupational therapy and other treatments were reasons for hope. A movie theater brought in most of the 400 patients in the 1950s for 2-3 nights a week. Patient's rights become a new focus with the Patient's Federation Organization and The Star and many human rights were restored. Also, the advocacy addressed acclimating discharged Hansen's disease patients into society again. (Applebome, 1989; Elwood, 1994, 1996; Fairchild, 2006; Harmon, 1995; Parascandola, 1994; Kellersberger, 1954; Martin, 1950; USDHHS, 2007; White, 2003).
MEDICAL AND REHABILITATIVE ASPECT
Effects of the new medicine promine promoted as the "Miracle at Carville" (Martin, 1950) were significant (Parascholdola, 1994). Patients who worked in the hospital and health workers received training in occupational therapy & physical therapy. Experiments and treatments continued in the hospital and the new research cottage. The new drug dapsone (in the form of promine) was founded and pioneered by Dr. Cochrane (Elwood, 1994; Fairchild, 2006; McDougall, 1979; USDHHS, 2007).
The major event that happened during this period was the extensive work in treatment and the rehabilitation field for the betterment of patients of Hansen's disease (Crieghton, 1961; Frantz, 1992; Marshall, (n.d); USDHHS, 2007). Implementation and use of the hand and foot care techniques helped patients' mobility and quality of life (Britton, 1993; Hughes, et al., 1968; White, 2003).
The development of foot care techniques helped many patients live more normal lives. In this period, most of the work was focused on rehabilitation of the patients and providing them assistance to live a normal life, if possible (Britton, 1993; Hughes, et al., 1968; White, 2003).
MEDICAL AND REHABILITATIVE ASPECTS
The HD classification system by Ridley-Jopling occurred in 1962. This led to an understanding of the reliability of the classification of patients for the diverse manifestations of HD and its therapeutic treatment and rehabilitation (Britton, 1993; Cross, 2006; USDHHS, 2007).
The first rehabilitation research program was initiated at Carville by Dr. Paul Brand and later by Dr. Riordan. Dr. Brand focused on preventive techniques and reconstructive surgery for biomechanical deformities of the hands and feet in patients. His work prevented amputation. He invented foot care techniques used throughout the National Hansen's Disease Program Rehabilitation Research Laboratory. This promoted understanding the development of deformities for the medical personnel (Hughes et al., 1968; Parascandola, 1994; Parascandola, 2003; Riordan, 2003; USDHHS, 2007).
There were no outpatients treatment centers established in the 1960's; however, isolation of patients or former patients was no longer required in the 1970's (Cannon, 1964; Hughes et al., 1968; White, 2003). In 1981, Regional Hansen's disease clinics were established to provide outpatient care for Hansen's disease (leprosy) patients. Eleven community health programs were started (Fairchild, 2004; Scilicorn, 2006; USDHHS, 2007). Former patients had a decision to make about their lives. Some remained at the facility because they no longer had family connections, a place to go, or a livelihood for their "community and life" was Carville (Fairchild, 2004; Gaudet, 2004; Zewe, 1998; Stein, 1998).
Over the past years, those patients considered comparatively healthy were discharged. But these patients faced societal rejection, fear, and seclusion from the outside world for a long time. Many did not adjust, had no close family contacts, no career, and no where to start in the outside world (Elwood, 1994; Hastings, 1994, Trautman, 1990).
MEDICAL AND REHABILITATION ASPECT
Dr. Hastings showed that the thalidomide drug could be used in treating Hansen's disease patients (Britton, 1993; Eldwood, 1994; Levis, 1984; USDHHS, 2007). During this period, Dr. Jacobson pioneered drug resistance and its prevention. Rifampicin was introduced as a part of the multi drug therapy (MDT) that proved very successful (Anderson, 2007; USDHHS, 2007; WHO, 2006). Diagnosis, treatment, follow-up, contact monitoring, disability prevention, education, and maintenance of a referral system for Hansen's disease health care services were initiated (Fairchild, 2004; Scilicorn, 2006; USDHHS, 2007.)
Dr. W.F. Kirchheimer, research scientist, developed the armadillo model as a tool for the development of HD and other systemic diseases (Elwood, 1994; USDHHS, 2007; WHO, 2008). This model proved to be very controversial for Louisiana residents were concerned about transmission of the disease through released or escaped armadillos. This pioneering research, however, continues today (Elwood, 1994; Hastings, 1994; McRae, 1978; Trautman, 1984; WHO, 1994, 2008; USDHHS).
The Health Resources and Services Administration, U.S. Department of Health and Human Services, assumed responsibility for the management and operation of Carville in 1982 (Division of National Hansen's Disease Program, 2002; Sternberg, 2005; USDHHS, 2007). The facility became the Gillis W. Long Hansen's Disease (Leprosy) Center, in 1986, named after the U. S. Congressman from Louisiana. He was a friend and associate of the Carville HD patients (Elwood, 1994; Parascandola, 1994; USDHHS; U.S. Public Law, 1981).
Some patients, like photographer Harmon, started living a normal life. Others kept returning, unable to survive in the outside word. Carville, for many of the HD residents, was their only home and community. Many HD survivors had no family contacts or resources outside Carville (Cannon, 1964; Harmon, 1995; Trautman, 1984).
MEDICAL AND REHABILITATION ASPECT
A Hansen's disease registry and database services were provided (Fairchild, 2004; Scilicorn, 2006; USDHHS, 2007.) The International Journal of Leprosy and Other Mycobacterial Diseases was started at Carville along with a world congress held every 5 years. The journal publication and dissemination of information and medical advances continued until 2005 (Elwood, 1994; ILA, 2005; Trautman, 1968).
In 1992, the Carville Historic District was placed on the National Register of Historic Places by the National Park Service (Hughes et al., 1968; USDHHS, 2007; U. S. House of Representatives, 1996; White, 2003). The Hansen's Disease Center Laboratory Research Branch moved to Baton Rouge at the Louisiana State University School of Veterinary Medicine (Elwood, 1994, 1996; Parascondola, 1994; Sternberg, 2005; USDHHS).
In the same year, The National Hansen's Disease (Leprosy) Museum was founded (1996). The museum was a result of exhibit items collected for the 100 year anniversary of the Carville Centennial (1994) and the Centennial of the Daughters of Charity of St. Vincent de Paul (Elwood, 1994, 1996; Lechtrek, 2005).
In 1998, The U.S. Congress passed a bill to relocate the Gillis W. Long Hansen's Disease Center to Baton Rouge, Louisiana. The bill was authored by Congressman Richard Baker (R-LA). Many patients at Carville had no place to go and some of these patients protested and appealed to the Clinton administration to remain (Fairchild, 2004; Wolf, 2000; White, 2003). Patients were given 3 choices: return to their own community with a stipend, continued care at another Public Health Service hospital, or remain at Carville where provisions were made for them. Forty residents remained at the facility in 1999 (Kern, 2003; Local Legacies, 2003; USDHHS, 2007).
In 1999, The U.S. Government returned the title of Indian Camp Plantation to the State of Louisiana, which located a new program for at-risk youths, supervised by the Louisiana National Guard. The Star, published for fifty years, continued to advance the cause of HD. Although Carville was not closed for many of the residents who stayed, it was no longer a leprosarium, but what they called their "home" (Applebome, 1989; Elwood, 1994; Stein, 1998; White; 2003).
MEDICAL AND REHABILITATION ASPECT
The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) awarded the Gillis W. Long Hansen's Disease (Leprosy) Center facility its highest level of accreditation, a three year accreditation with commendation in 1993 (Elwood, 1996; USDHHS, 2007).
A WHO study group in 1994 recommended Multidrug therapy (MDT) consisting of the drugs: dapsone, rifampicin and clofazimine. This was the MDT successful in curing HD and used for outpatient treatment. They proposed a resolution and plan for the global elimination of leprosy. Then, in 1998, the International Leprosy Congress was held at Beijing, China. This Congress was instrumental in recommending the MDT for HD treatment. A true cure was found, due to extensive research at Carville (Anderson, 2007; International Leprosy Congress, 1998, December; International Leprosy Congress, 1998; WHO, 2006).
The Hansen's Disease Center was awarded a $3.5 million grant to test drugs that fight tuberculosis. The grant was headed by Dr. James Krahenbuhl, Director of the National Hansen's Disease Programs, and Director of the laboratory research branch and awarded in 1995 (USDHHS, 2007).
With the closing of Carville as a national leprosarium and the recommendation of the multi-drug therapy as a true "cure" for Hansens's Disease, the Carville legacy came to an end in 1999 in the U.S. All patients diagnosed now are treated on an out-patient basis (International Leprosy Congress, 1998; Kern, 2003; Local Legacies, 2003; USDHHS, 2007). According to Dr. Krahenbuhl, (Director of the National Hansen's Disease Programs), as of August 25th, 2008, 36 former Carville residents left with a stipend, 9 residents transferred to the "infirmary" at Summit Hospital (now Ochsner Hospital) in Baton Rouge, La, and 16 remain at Carville, La. in the assisted living facility (Krahenbuhl, 2008). Now, the dream of the global elimination of Hansen's disease as a public health problem, while not fully realized, is possible in the United States (Anderson, 2007; WHO 44th World Health Assembly, 1994; WHO, 2006).
LIMITATIONS AND DELIMITATIONS
The investigation was limited to the historical archival data retrieved from at the National Hansen's Disease Museum in Carville, La. and Lamar University's library and Inter-library loans from 1894-1999. One historical method, Garraghan's method of historical inquiry and rank order, was used for references. Four researchers chronologized, categorized, and validated the historical events with 3 references. Secondary documents were considered primary sources when using historical methods.
IMPLICATIONS FOR THE UNITED STATES
The xenophobia connected with the "L" word continues to be prominent and uttered by many persons today. Patients at Carville spoke about eliminating the term 'leprosy" in 1948 (Daughters of Charity Annals, 1948). The stigma and the use of the word were worse than the disease for most patients (Cross, 2006; Martin, 1950; Ramirez, 2002; Scillicorn, 2006). The social injustices inflicted on patients and even on discharged patients needs to be reversed. Recommendations to combat this were to develop culture-specific explanatory models for leprosy stigma and policy developments guided by psycho-social perspectives rather than just epidemiological objectives and self-education (Cross; Ramirez; White, 2003).
The National Hansen's Disease Museum represented a monument to those who battled Hansen's disease and the medical personnel and Sisters of Charity who served at Carville (Eldwood, 1994; Fairchild, 2004; Gaudet, 2004). The widespread use of MDT was a major strategy for prevalence reduction in HD (Britton, 1993). The research that revolutionalized treatment for HD also helped other diseases as tuberculosis, HIV/AIDS, and diabetes. This research and research into other diseases continues at the Health Resources and Services Administration Hansen's Disease Program at Baton Rouge, LA (British Broadcasting Center, 2003; Texas Department of State Health Services, 2005; Wolf, 2000).
IMPLICATIONS FOR THE WORLD
For leprosy endemic countries, the action and mobilization of adequate resources are necessary. Clinics in endemic sections are recommended. Required treatment, education, training, and rehabilitation concerning HD must be available worldwide. Knowledge and enlightenment on HD for medical personnel should be mandatory. There is now an opportunity to solve a public world health problem; if the nations and governments of the world take responsibility and act, then perhaps HD can be eradicated forever (ILA, 2006; Martin, 1950; WHO, 1994 & 2006).
Now that mandatory confinement of Hansen's disease patients in leprosariums is no longer enforced in the U. S., there are still individuals worldwide affected by this disease and the isolationists' policies. One of Carville's main problems, for many years, came from a lack of adequate funding sources, evidenced by the many different names and governing bodies shown in Table 1 (Elwood, 1994; Gaudet, 2004; White, 2003). Also, HD was not as prevalent in the United States as it was and still is in other countries, but former patients and newly diagnosed patients may still continue to be stigmatized (WHO, 2006).
Governments and citizens have an obligation to provide access to medical services (outpatient care, treatment, physical therapy, and social services), education for the family and employees about the disease, and assistance with disability benefits. Information and education for Hansen's disease needs to be disseminated with support and monies available for newly diagnosed patients' worldwide (White, 2003; WHO, 1994, 2006).
Global strategies and resolutions for elimination of HD are paramount to decreased prevalence and incidence through an international disease surveillance system (WHO 44th World Health Assembly, 1994, 2008; WHO, 2006). The World Health Organization (2006) recommended that national and local health agencies take full responsibility for early detection, diagnosis, and treatment through multi drug therapy, ensure a regular supply of the multidrug treatment free of charge to all health facilities, promote awareness, and monitor the progress of Hansen's disease elimination. They recommended that agencies with national programs in endemic counties remain on track and collect accurate statistical data. Essentially, the way to eliminate Hansen's disease in affected countries is to cure it, avoid disability, reduce the disease burden, provide early detection, develop community awareness programs aimed at removing the stigma, and treat patients with multidrug therapy (WHO, 2006). "The global strategy builds on the geographic stratification of the problem, based on epidemiological and operational factors" (WHO, 2006, p. 1).
These strategies are especially important for those under-served and communities most at risk to eliminate the disease as a public health problem. The World Health Organization offered free MDT treatment since 1995 and the global number of new Hansen's disease cases worldwide has decreased at an average of 20% per year (WHO, 2006). In the United States, most cases recently diagnosed were in California, Texas, Hawaii, New York, and Louisiana (Anderson, Stryjevska, Bouangon, & Schwartz, 2007; Texas Department of State Health Services, 2005; WHO, 2007).
Resolutions and recommendations by the World Health Organization (1994; 2006; 2008) declared their intention to eliminate HD as a public health problem as did the WHO Global Strategy Report for 2006-2010. The global strategies helped, but more strategies are necessary in the future to fully eradicate HD from the world (Britton, 1993; International Leprosy Association, 2006; WHO, 1994, 2006). Today, there are 224,717 cases of Hansen's disease in the world (WHO, 2007) and in the Unites States there are approximately 6,500 cases (Texas Department of State Health Services, 2005).
The origin of the stigma and the fear concerning HD, passed down through generations, does not belong in a civilized society (Fairchild, 2004; Ramirez, 2002; White, 2003). New cases diagnosed in the United States are treated quickly with MDT and any newly diagnosed patient does not have any disabling effects nor is institutionalization or "quarantine" required (Texas Department of State
Health Services, 2005; WHO 2006). It is because of this human principle that this article inspired the investigators...so mankind does not ever forget what happened. No human being must ever belong to the "secret people" where No One Must Ever Know (Martin, 1950; Martin, 1959), or become the "living dead", feel like "exiles in their own country" (Stein & Blockman, 1963), or beg for someone to love them (LeBeaux, 1985) because of a now curable disease. The legacy of Carville lives on in history, but society must ensure that history does not ever repeat itself.
The term "leprosy" is used in historical context, only, and in no way endorses the use of the terminology. This research was sponsored by the Lamar University's Research Enhancement Grant Program (Beaumont, Texas). A thank you is extended to Elizabeth Schexnyder, Executive Director of the National Hansen's Disease Museum at Carville, Dr. James L. Krahenbuhl, Director of the National Hansen's Disease Programs, and Colonel Clyde Guillory, Installation Commander and Major Jona Hughes at the Gillis W. Long Center at Carville.
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Barbara Lorraine Michiels Hernandez, PhD, CHES, is affiliated with Lamar University. Rasika Vengurlekar, MS, BPT, is affiliated with Lamar University. Abhishek Kelkar, MS, BPT, is affiliated with Lamar University. Gincy Thomas, BPT, is affiliated with Lamar University. Please send all correspondence to Barbara Lorraine Michiels Hernandez, PhD, CHES, P. O. Box 10039, Lamar University, Beaumont, TX 77710. Phone: 409-880-7725 (0), Fax: 409-880-1761, E:mail: Barbara.Hernandez@lamar.edu; firstname.lastname@example.org.
Table 1. Carville's Name Changes from 1800-2000 1800's-Houma's Indian Camp 1825-Woodlawn Plantation 1894-Louisiana Leper Home 1921- United States Marine Hospital #66 and The National Leprosarium of the United States 1981-United States Public Health Service Hospital and National Hansen's Disease Center 1986-Gillis W. Long Hansen's Disease Center 1999-Indian Camp Plantation (Title returned to state of Louisiana for a program for at risk youth supervised by the Louisiana National Guard) 2000-Carville, La.; National Hansen's Disease Program relocated to Baton Rouge, LA; Some former patients stay at Carville, La; Louisiana National Guard interred at Carville (Elwood, 1994; Gaudet, 2004; White, 2003).
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