HRSA’s Hansen’s Disease Program Marks 90-Year Anniversary
The main building at Carville. |
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One of HRSA’s least-known programs is also its oldest. This year marks the 90th anniversary of the initial Federal response to the treatment of Hansen’s disease, also known as leprosy.
In 1917, U.S. Congress passed an act to establish a National Leprosarium, but four years passed before a site was finally selected: the isolated Mississippi River town of Carville, La., where the Louisiana Leper Home had been in operation since 1894.
Carville was not the first choice for the leprosarium, but residents in other areas objected to having the facility sited near them. Recorded cases of leprosy span millennia, and in ancient times it was widely feared as a contagious and incurable disease leading to gross physical disfigurement.
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Today, in spite of readily available and effective treatment options, the stigma long associated with the disease persists.
That congressional action 90 years ago has evolved into HRSA’s National Hansen’s Disease Program (NHDP) – now headquartered in Baton Rouge, some 15 miles upriver from the Carville facility.
The program is the center of Hansen’s disease care, research and information in the United States.
Officials at the program work to solve the many mysteries that shroud this disease, while delivering care to those who suffer from it.
Despite the considerable challenges researchers face, one of their greatest struggles may be to educate the U.S. health care providers who first encounter people with Hansen’s, often called HD.
HD is a chronic bacterial disease that primarily affects the skin, peripheral nerves and upper airway of infected individuals.
Although historically seen as very contagious, HD is not highly transmissible: 95 percent of people are naturally immune to the M. leprae bacillus. With a quick and accurate diagnosis, proper care and modern medicines, Hansen’s can
be successfully treated.
HD remains rare in the U.S. In 2005, 166 new cases were reported, most of them in five states: Texas, Louisiana, California,
New York, and Massachusetts. Currently, 6,500 cases are on the NHDP register, of which about 3,300 are under outpatient medical management in consultation with private-sector physicians. Because these numbers are relatively few,
diagnosis in the U.S. is often delayed because health care providers are unaware of HD’s typical skin lesions and classic
neuropathy. No blood or skin test reveals exposure to the disease, although both of these are active research areas at the
NHDP.
Treatment options include combinations of antibiotics, with regimens lasting up to two years.
Treatment rapidly renders the disease non-communicable by killing nearly all the bacilli within a few days.
Dead bacilli are cleared from the body within a few years, although patients must be monitored for years after to detect nerve-destroying flare-ups that may recur.
“HD isn’t difficult to treat,” according to Dr. Jim Krahenbuhl, NHDP Director. “If it’s caught early, most people don’t have to suffer greatly – but if it is left to develop, serious neurological consequences can occur. That’s why we spend a great deal of time in our program building awareness by reaching out to medical professionals with a comprehensive HD training program. It’s critical to preventing real disability.”
The NHDP cares for 11 patients in a long-term nursing facility at Ochsner Medical Center in Baton Rouge and runs an outpatient clinic and rehabilitation center there. Another 16 elderly patients still live at the Carville facility. The program also oversees an ambulatory care network with 11 clinics in seven states and Puerto Rico, and makes referrals for treatment.
Still a Mystery...
HD’s method of transmission remains unknown: researchers have never been able to culture M. leprae in a bacteriologic media or cell culture. Program researchers at the Louisiana State University School of Veterinary Medicine are working to develop a test to diagnose early HD infection and design a vaccine to block transmission.
As mentioned in the story, many newly infected individuals hail from the Texas Gulf Coast and southern Louisiana, where an estimated 100,000 HD-infected armadillos roam. Because armadillos are the only animals other than humans naturally infected with HD, they have become prime suspects for possible transmission to humans in these areas. This potential source of the disease would be unique to the U.S., as there are no armadillos in other parts of the world where HD is prevalent, such as India, Southeast Asia, Africa and the Pacific Islands.
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Did You Know....
Hansen’s disease, or Mycobacterium leprae (M. leprae), is a relative of Mycobacterium tuberculosis, the bacillus that causes tuberculosis. It was first identified by G.A. Hansen in Norway in 1873. The stigma associated with the word “leprosy” remained so strong that patients, their families and some health care practitioners prefer to use “Hansen’s disease,” or HD, as a substitute for the feared term. |
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RADM Don Weaver, HRSA's Deputy Associate Administrator for Primary Health Care, visited the Hansen’s Disease facility in Baton Rouge. Dr. Weaver (at right) met with an HD patient (left, seated) and employees CDR Alicia Hoard (left center), an Occupational Therapist, and Pam Bartlett (center right), a social services staffer.
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Printer-friendly April 2007 Inside HRSA (Acrobat/PDF)
