She was really sick, nobody knew what it was, but she and her family finally did…and kept it secret.
At the beginning she took care of herself, but when the untreated HIV progressed to AIDS and she could barely walk, the dirty clothes piled on the room, the smell was almost unbearable. Her family wouldn't wash her clothes for fear of contracting the disease.
In February 2006, her family managed to send her home where she died a few months later. She was a Chuukese living in Guam. But her story is hardly unique.
The islands of Chuuk and Guam, in the U.S. Pacific Jurisdictions, are traditional societies by all accounts. You won't find an orphanage, a hospice or a nursing home, because family members are expected to take care of their loved ones from cradle to grave.
"And they do," says Alexis "Al" Silverio, executive director of the Guam HIV/AIDS Network Project (GUAHAN). "But HIV is different because they don't really know anything about it. They see it as a mysterious disease that can be contracted by any contact."
When the GUAHAN project began working with the issue of HIV/AIDS, tuberculosis and sexually transmitted diseases, they had a rough time explaining to the people in Guam what the problems were and the importance of testing.
But talking to the Chuukese living in Guam was even harder, and the language barrier was only one of the problems.
"Women from Chuuk are the fastest growing HIV-infected group in Guam," said Silveiro. "The problems are complicated with domestic violence and the traditionally subservient role of women in Chuukese society."
Also, Chuukese are ridiculed in Guam. "They are very poor and have a reputation of being troublemakers. Women come to Guam to give birth, and they get priority for housing, food stamps and a few other benefits. But they still live in substandard conditions," explains Silveiro.
The Story from Chuuk
Chuuk, one of the four states of the Federated States of Micronesia, has an annual average income of $1,800, a minimum wage of $1.25 and partially working electricity and water.
When statistics showing more than half of the Chuukese living with HIV were infected outside of the Chuuk islands, health officials decided to take the do-it-yourself approach to tackling the problem.
Eleanor Sos, the HIV Coordinator for Chuuk, said 60 percent of the positive cases were coming from the U.S. territory of Guam, about 600 miles Northwest of the Pacific islands that comprise the Micronesian islands of Chuuk.
Chuukese are migrating to Guam for jobs in the services industry, in restaurants, hotels and people's homes. This community, with limited English proficiency, has seen a spike in rates of sexually transmitted diseases, leaving health groups searching for a way to reach out.
In the Chuukese community, HIV is often seen as a disease of homosexual white males, but Chuukese women have the fastest growing HIV rate on Guam, changing the face of the disease.
"The situation is women are not just testing positive for HIV, they're testing positive for full-blown AIDS," said Silverio, who conducts HIV testing through oral swabbing in GUAHAN's Resource Center or in a location more comfortable to the tester. "And they're infected by partners—boyfriends or husbands—who have known their status for a long time. They have the paper saying when they were tested and that they were positive."
Instead of taking the task-force route or asking outside parties for assistance, health officials from Guam and Chuuk announced the creation of a tag-team effort among health workers from Guam and Chuuk, during a 2004 Pacific Islands Jurisdictions AIDS Action Group (PIJAAG) meeting.
"We don't really have the infrastructure to meet the needs of the Chuukese with our staff," said Bernadette "Bernie" Schumann of Guam Public Health. "It was important to bring over our Chuukese counterparts because the community was so underserved on Guam."
Schumann said social dynamics, culture and language presented a challenge as she worked to understand how violence was equated to discipline and how to contact clan leaders about outbreaks of syphilis and other STDs.
A cross-culture exchange seemed to be a good way to initiate a change, Schumann said.
The Guam-Chuuk Exchange
In an effort described as "grassroots," Schumann and Sos made plans to conduct a series of informational sessions for the estimated 10,000 Chuukese living on their neighboring island in the Pacific. That was the birth of the Guam-Chuuk Exchange.
"We thought hearing their language and hearing it from their own people might give some motivation when seeking services, so we can help [the Chuukese] to come out and be part of the community," said John Hebel, National HIV Coordinator for the Federated States of Micronesia, covering Chuuk, Yap, Kosrae and Pohnpei.
It took almost two years to coordinate as the two teams worked with faith-based organizations and representatives from public health departments, raised their own funding, and assembled a team of workers from Chuuk and Guam to discuss issues of HIV with Chuukese community. Travel to Guam was funded through grant money from the Office of Minority Health Resource Center (OMHRC).
The sessions dealt heavily on the topic of STDs, with anti-violence messages aimed at the Chuukese women who have been silent victims of sexual assault, domestic violence, rape and incest, according to Silverio.
"Most of the males believe they are the breadwinners and they can do what they want," Silverio said. "Women are also telling their daughters and young females not to report or not to bring up things that might cast a negative light on the family."
When alcohol, which is cheaper and more easily accessible in Guam than in Chuuk, is factored into the equation, Silverio said altercations have ended in physical violence.
So when Silverio found out the Exchange was being set up to address the multiple issues, he asked if the GUAHAN Project could take part in the event.
"Before, they'd come from Chuuk to do outreach to their people and get no support from the local authorities, but now the GUAHAM project and the Public Health Department are working closely with them. We took them to the most remote areas where Chuukese live and receive no services," said Silveiro. "It has solidified our relationship, but we have a long way to go in servicing the Chuukese."
The four-day Exchange took place in February 2006 with the two teams, totaling about 14 members, meeting with Guam officials during the day and the Chuukese people in the evening when adults had completed their workdays and children were out of school.
The sessions, held in offices and churches, brought at least 800 people who received information about HIV and pamphlets about access to services and clinics in the area. They also received the mission of spreading the word in their neighborhoods. One of the focuses was dispelling myths about the ways a person can be infected with HIV.
During the visits, they were invited by the Sunrise Rotary Club in Guam to give an impromptu talk. Sos said that about 50 percent of the people that received information had no previous knowledge of HIV/AIDS or other STDs.
"No. 1, it's language barriers—people don't know English, which limits their access to most materials" Sos said, "and they're not aware of most of the services available where they're located."
Many in the Chuukese community in Guam live in underdeveloped, remote areas without running water, proper housing or facilities, making it easier for E-coli, tuberculosis and hepatitis to run rampant and harder for police, ambulances and school busses to access the area.
Overall, Sos said, responses to the sessions were positive.
"They appreciated the project and they asked why we didn't decide to do this long ago," she said, adding that she believes this will increase communication between the Chuukese on Guam and the health officials. "Because of the project we coordinated, the Chuukese people on Guam are involved more in health care and they were going to check their [HIV] status."
The Exchange Continues
Martina Otokko, a Chuukese woman who came to Guam to double major in public health and social work, helped organize the Exchange by connecting event coordinators to Chuukese community leaders and members. Otokko also helped advice organizers about words that would not be culturally appropriate to use in male-female groups. During the Exchange, she translated comments into Chuukese.
"For the people, who attended the outreach, it opened their minds," Otokko said, "it's the first time they heard of that and it makes them understand: HIV is important"
Otokko, 29, said she's working in public health to do whatever she can to help the Chuukese on Guam, because they are struggling.
"We must be urging them and teaching them how to protect themselves," she said, "give them some fliers that will give out information about the disease so they will be aware."
And although Hebel said they were able to inform attendees about available services, he hoped "word-of-mouth" on the importance of testing would result in behavioral changes and a greater level of comfort with seeking assistance.
"We [Chuukese] are very quiet and we aren't very comfortable in meetings with national people, but with us being there it allowed them [Chuukese in Guam] to come out of their shell," Hebel said, "and they should not be afraid of the people that have come to help them."
There are plans to follow up with a similar event during the summer 2007 to continue to target the Chuukese women. A similar event is in the works for the big island of Hawaii for Chuukese located there in 2008 or 2009. In the meantime Schumann is working to recruit Chuukese interpreters and conduct a random survey of 300 Chuukese about STD knowledge and high-risk behaviors for Public Health to better serve the Chuukese population on Guam.
"I think it's incredible," said Henry Ocampo, capacity-building specialist for OMHRC. "They identified a great need and instead of waiting for the mainland or the federal government to do something, they addressed those needs for the Chuukese living in Guam."
Fia Curley is a writer for the OMHRC. Comments? E-mail: firstname.lastname@example.org
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