Stigma of Hansen's challenges officials
| • | Facts about Hansen's disease |
By Christie Wilson
Neighbor Island Editor
Most people in Hawai'i are familiar with the story of Father Damien and the tragic history of the Kalaupapa leprosy settlement, but few realize that new cases of Hansen's disease are detected in the Islands each year.
An average of 20 new cases a year have been reported since 1991, primarily among immigrants from Asia and the Pacific.
A cure for Hansen's disease, which is caused by a slow-growing bacteria, became available in the 1940s, yet the illness still carries a stigma that represents a formidable challenge to public health workers trying to contain its spread among foreign-born residents.
"There are people who don't even want their husband or wife or their own children to know they have the disease. That's how scary it is for them," said Barbara Yoshioka, who heads the Hansen's Disease Community Program under the state Department of Health. "People are just afraid. They're afraid they'll get kicked out of their house or lose their job. We really try to reassure them."
In the past 11 years, 217 new cases of Hansen's disease were detected in Hawai'i. Almost half — 104 cases — were Filipino immigrants, while 20 percent (43 cases) were among migrants from the Republic of the Marshall Islands, 17 percent (36 cases) were migrants from the Federated States of Micronesia, and 7 percent (15 cases) were from Samoa.
During that same period, there were eight cases reported in Hawai'i-born patients, but there has been only one such case in the past five years.
Through the mid-1990s, public health officials relied on a passive approach to detecting new cases of Hansen's disease that was based on referrals from a network of 80 or so doctors in private and community clinics.
This method was considered adequate until 1996, when a small cluster of nearly a dozen cases of the disease was discovered among a group of Micronesian migrants living in Kona. The patients were believed to have contracted the illness outside Hawai'i and most belonged to the same family.
Different rules
Normally, immigrants are required to undergo screening for communicable diseases such as tuberculosis and Hansen's disease. That is not the case, however, for citizens of the Federated States of Micronesia and the Republic of the Marshall Islands, two nations in the Western Pacific where the disease has become established because of poor living standards and inadequate healthcare.
The Compact of Free Association with the United States allows citizens from the two former Trust Territories to travel freely to this country without visas and other restrictions, including health screenings.
Michael Maruyama, who heads the Department of Health's Hansen's Disease Branch, said that since the Kona cluster, officials felt a more aggressive approach was needed because of the cultural, language and economic barriers that prevent many migrants from seeking Western medical care.
As a result, the Department of Health launched a screening program targeting people from Micronesia and the Marshall Islands. Public health nurses visited churches with Marshallese and Micronesian congregations to provide information and arrange for in-home screenings.
The visits were a success, with between 50 and 80 people signing up at each appearance. The number of people who were screened turned out to be even greater, as folks invited their friends and relatives to come over to be examined, too.
Screenings involve a visual examination for skin rashes, lesions or other signs of the disease. If necessary, a simple "punch" biopsy is done later at a clinic, requiring only topical anesthesia.
When the diagnosis is confirmed, the patient undergoes multi-drug antibiotic therapy for anywhere between six months to two years. Once cured, patients are put on a four-year monitoring program to check for possible recurrence.
Stigma remains
John Ishoda, a Marshallese who came to Hawai'i in 1974 and works as an interpreter for the Department of Health, said the migrants welcome the public health nurse visits because it's a service they can't get at home, and the testing and treatment are free.
But even in Micronesia and the Marshall Islands, where diabetes, cancer and malnutrition are greater health concerns, there is a stigma attached to Hansen's disease, Ishoda said. This is more true for residents of the outer islands, who are less likely to receive health education.
People with the disease may try to hide their symptoms or seek herbal remedies from local healers, he said, and preventive care is an unfamiliar concept.
"A long time ago people didn't have all these diseases," Ishoda said. "They go to the hospital when they feel pain. Preventive care is not something that they are aware of."
Yoshioka said even among Hawai'i's well-educated population, misconceptions about Hansen's disease still abound.
"It's a very different disease today than in Father Damien's time. There's nothing to be afraid of. It's very easy to treat and it's very curable. We don't want people hiding from it," said Yoshioka, who noted that the Belgium priest who ministered to patients in Kalaupapa is the only healthcare worker in Hawai'i to contract the disease.
The Hansen's Disease Community Program, established in 1982, has three public health nurses devoted exclusively to providing Hansen's disease screening, monitoring and education. The nurses are based at Public Health Nursing offices in Leeward and Central O'ahu and in the Kalihi area. Elsewhere statewide, public health nurses handle Hansen's disease services along with their other duties.
Last year, the Hansen's Disease Branch had 272 people on its registry, including 84 who were undergoing outpatient treatment and 188 who had been cured and were being monitored annually for recurrence.
The registry does not include the 44 elderly Hansen's disease patients who live in Kalaupapa, even though the state ended its century-old policy of involuntary isolation in 1969.
'10 to 12 patients' a day
The settlement was declared a national historical park in 1982, and eventually will be turned over to the National Park Service.
The Hansen's Disease Branch also runs Hale Mohalu, a 21-bed facility at Leahi Hospital for Kalaupapa patients who need medical care in Honolulu. On any given day, there are 10 to 12 patients there, Maruyama said.
The branch has an annual budget of just under $5 million, with $2 million reimbursed by the federal government. Nearly $3 million of the budget is spent for Kalaupapa, and about $1 million each is devoted to outpatient services and Hale Mohalu.
Maruyama said public health nurses have done a good job of containing the disease through education and screening programs, and physicians continue to play an important role in identifying new cases.
Even with the ongoing increase in migrants from Micronesia and the Marshall Islands, Maruyama does not anticipate a steep increase in the incidence of Hansen's disease in Hawai'i.
"If it was going to happen, it would have happened by now," he said.
