Lecture 22: A History of Hansen's Disease (PDF)

Hansen’s disease (leprosy) - Galen called it ‘elephantiasis Graecorum’ - mai ho’okawale: separating sickness (Molokai, Hawaii) - 19th century Louisiana: ‘la maladie que tu nommes pas’ (the disease you do not name) - US Public Health Service adopted the name “Hansen’s disease” in...

Hansen’s disease (leprosy) - Galen called it ‘elephantiasis Graecorum’ - mai ho’okawale: separating sickness (Molokai, Hawaii) - 19th century Louisiana: ‘la maladie que tu nommes pas’ (the disease you do not name) - US Public Health Service adopted the name “Hansen’s disease” in 1948 - Hansen worked in Norway’s National Leprosarium #1 - Leper colonies or houses were widespread in the Middle Ages, as places to quarantine people with leprosy - Chrisitian-run leprosy houses were often called “lazarettes” or “Lazar houses” after Lazarus, the patron saint of people affected by leprosy - 1960: WHO recommends the abolition of compulsory isolation of those with leprosy Leprosaria - In 1866, Hawaiian Kingdom designated Kalaupapa peninsula as site for isolation colony for people with Hansen’s disease (leprosy) - Hawaiian law requiring isolation of people with Hansen’s disease continued until 1969 > 8000 people w/ the disease were exiled - People with Hansen’s disease were forcibly taken from their homes and families and brought to Kalaupapa (separating sickness) - After the isolation law was lifted in 1969, remaining patients were allowed to remain there “for as long as the person may choose...” and “shall be accorded adequate healthcare and other medical treatment and services for the remainder of their lives…” - As of 5/2024, 8 former patients are still living and some still live at least part time at Kalaupapa - Only national leprosarium in the continental US: Carville, Louisiana - 1917: Senate Bill number 4086 passed to establish a National Leprosarium in Carville, Louisiana - 1921: U.S. Public Health Service takes operational control: “U.S. Marine Hospital No. 66” later “Gillis W. Long Hansen’s Disease Center” (1986) - Previously run by State of Louisiana (1894-1921): “Louisiana Leper Home” - Daughters of Charity of St. Vincent de Paul - Order of Catholic sisters provided nursing care at Carville (1896-2005) - Carville served as… - An institution for isolation of people w/ Hansen’s disease - A hospital for care of patients and development of treatments for Hansen’s disease - A laboratory to study the bacterium and medications - Carville encapsulates that which is both unjust and positive in the history of leprosy unjust positive - Patients encouraged to change their - Development of community names and adopt new identities upon - Raise awareness of the plight of HD arrival patients - Married patients could not live with - Name change from leprosy to HD in non-patient spouses 1948 - Patients could not vote until 1949 - Reconstructive surgery - Outgoing mail was sterilized - Breakthroughs in treatment - Upon discharge: certificate ‘Public Health Service Leper, reason for discharge: no longer a menace to public health’ - Children of patients could not live on-site - Marriages between patients were not allowed until 1950s Medical treatments - Early 20th century: chaulmoogra oil - Painful injections Dr. Guy Henry Faget (officer of U.S. Public Health Service) - 1941: Promin, a sulfone drug, the “Miracle of Carville” - painful injections - 1950s: Dapsone pills - Bacterial resistance - 1981: World Health Organization recommends multidrug therapy (MDT): dapsone, rifampicin, and clofazimine (for 6-12 months) Hansen’s disease today - No highly effective vaccine available (BCG vaccine currently used) - But widespread use of MDT reduced the burden of leprosy - Stigma continues to be a barrier to self-reporting and early treatment - Still ~200,000 new cases annually worldwide