Hāna resident Uncle Francis Blue Lono was receiving dialysis in Wailuku, when he convinced a visiting Medicare official to take the Hāna Highway—a move that helped raise understanding of Hāna's dialysis plight.

Hāna follows its own road in solving a
Dialysis Dilemma

By Liza Simon / Ka Wai Ola

Tiny Hāna, the epicenter of a diabetes crisis, will soon be hailed for its model treatment of the disease when the isolated East Maui region becomes the site of the nation's first-ever communal home for dialysis. Some logistical hurdles need to be cleared by Maui County before the home begins operations, which will likely be in early spring, according to a spokesperson for the Maui mayor's office.

Ka Wai Ola Cover Story

Once the maile lei blessing takes place in front of the doors of the new home, Hāna dialysis patients will no longer be making the grueling three hour, 54-mile trek down the Hāna Highway to Liberty Dialysis' Maui Lani Clinic in Wailuku, the nearest facility providing lifesaving dialysis for serious kidney failure commonly caused by adult-onset diabetes.

The Centers for Medicare and Medicaid in October gave approval for the Hāna communal home. Officials marked the milestone announcement with a ceremony in Hāna, where they gave praise to a group of concerned Hāna residents who have worked hard to resolve the longstanding dialysis dilemma, which mirrors similar healthcare access problems faced by other rural and minority populations nationwide.

One of those residents getting the nod from officials is Lehua Cosma—a Hāna High School custodian, who never expected to become a foot soldier in the battle to end her community's dialysis ordeal. “Oh, if I only knew then what I know now,” said Cosma, referring back to the day four years ago when her Mother Cecilia Park was diagnosed with type 2 diabetes, the most common form of the disease. “My mom had mild symptoms at first, so we went to special diabetes workshops on how to control the condition with diet and exercise,” Cosma adds.

But after a heart attack in 2003, Cosma's mother needed dialysis three times a week in order to survive. “We were so unprepared for the huge change we suddenly faced,” she said. Cosma's dad took early retirement so he could drive her mom down the winding Hāna road to Wailuku. They rise at 2 a.m. and leave in the pre-dawn hours in order to make the appointments on time.

Kidney failure can be caused by diabetes, hypertension, and other renal diseases. Dialysis replicates the function of the kidneys by removing blood from the body, filtering out the toxins and returning the blood to the body. The process can extend a patient's life by years, in some patients decades, but it leaves young and old alike feeling weak, often exacerbating other conditions like anemia, a common side effect of diabetes. Cosma's mom recuperates from dialysis by over-nighting in Wailuku at the home of relatives before returning to Hāna and then gearing up for the next day's arduous trip back to dialysis.

{ in memoriam: }

Pictured here are Hāna residents, young and old, who succumbed to fatal complications of diabetes requiring dialysis. Their photos are from a website tribute to the late Dr. Steven Moser, a beloved renal specialist, who supported the Hāna grassroots effort to bring dialysis to the rural community. L to r: Harry Mitchell Jr., Henry Rost Jr., Aunty Lei Mamo Lee, Evangeline “Honey Girl” Kaina, Louis Pua, Bruce Villiarimo. - Photos: Courtesy of Jonathan and Dr. Robert Moser, webmasters for www.dialysisforhana.com

Cosma said the monthly cost of gas to and from Wailuku can easily top $1,000 a month. But she said the worst part of the long road-trip is that it cuts into the enjoyment of customary 'ohana gatherings. Her mom has 7 children and 18 grandchildren. Cosma believes their time spent together is important to the healing process. “But now we break up early and go our separate ways so that Mom will have time to rest up.”

Cosma discovered early on that her Native Hawaiian family was hardly alone in coping with the impacts of the disease requiring dialysis. Type 2 diabetes hits Hawaiians harder than any other ethnic group in the state. A 2004 Hawai'i Department of Health study shows that the condition progresses faster in Native Hawaiians, who are also more likely than any other group to die of potentially fatal diabetes-related complications, including stroke and heart attack.

There was no doubt in Cosma's mind that in Hāna, which is 67% Native Hawaiian, the difficulties of diabetes are compounded by the geographic barrier to treatment. Her mother's spirits have remained high, but she knows of some who felt alone and ashamed of their ailing health. Not wanting to burden others, they simply gave up. “Everyone is Hāna has been affected by the death of a neighbor or friend or family member who went through the suffering of diabetes. In a community this close, we all suffer from this disease.”

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Three Hāna community members who will benefit from communal home setting for dialysis are (l. to r.): Rebakka Setereo, Francis Blue Lono, Cecilia Park. Hāna's non-Hui Laulima O Hana welcomes donations in support of the new home. For info: www.dialysisforhana.com

Health care providers customarily give rural residents the option of home dialysis machines designed to use without medical assistance in the privacy of a bedroom. “But in our multi-generational homes we don't have that kind of privacy nor the storage room to handle these machines,” said Cosma. Also, many older homes in Hāna's rainy climate with weather-worn infrastructure can't safely handle the machines' electrical, water, and drainage needs. Some residents have proposed that Hāna have its own out-patient clinic like the one in Wailuku with hemo-dialysis machines- requiring full-time medical staff, but cost is a barrier. Dialysis providers, which depend largely on Medicare and Medicaid reimbursement, would not be able to line up enough patients to support such a clinic in this rural enclave of no more than 1,800 full-time residents.

This seemed to leave the difficult road trip as the only path to dialysis treatment for Hāna residents.

“But as individuals, we decided to take the problem head-on, even though plenty agencies told us so many times, 'No way',” said Guy Lay, a Hāna farmer, who helped Cosma in founding the dialysis patient support group and non-profit–Hui Laulima O Hana. “Call us hard-head, but we wouldn't give up. We realized that it was not for us but for others — we were doing this. It's especially for the kūpuna and all the things they deserve in the twilight of their lives,” said Lay.

Lay took the Hui's concerns two years ago to health officials from OHA and the Native Hawaiian Health Care Systems and found them eager to help. The federal government has tracked a marked increase in diabetes 2 and the need for dialysis in all indigenous groups in the U.S., including Native Americans, Native Alaskans, Sāmoans and the Chamarro peoples of Guam. The picture that is beginning to emerge from research is that genetic factors or family history may play a role in putting these populations at risk; but there are also issues of lifestyle—obesity, poor diet and lack of exercise, that play into the grim statistics for native rates of diabetes. According to research by Mele Look of the John A. Burns School of Medicine, low income status—a common denominator in Hāna's Native Hawaiian population, is also a factor, since “People with lower income have a tendency to eat cheap fast food that's very high in fat.”

Lehua Cosma and others in the Hui touted the bad news in public meeting after meeting armed with resolve to help their loved ones. “I told our story so many times at the Maui County Council that I got to the point where I no longer needed the piece of paper with all the facts written down. I knew it all by heart,” said Cosma, who credits East Maui County Councilman Bill Medeiros for his support. Madge Schafer of the Governor's Advisory Council also became interested in helping the Hui Laulima O Hāna.

At last there came a tipping point – not from a seat of political power, but rather from the quiet voice of 67-year old Uncle Francis “Blue” Lono, a Hāna fisherman and employee of the National Tropical Botanical Garden who catches the Maui Economic Opportunity bus to Wailuku for dialysis treatment. “Go drive the Hāna Highway and see for yourself what it's like,” he suggested to visiting Medicare official, who happened to be making a site visit to Wailuku.

“(The official) took the ride on a terrible stormy day–-and he got it. He sent out an e-mail the next day saying no one should have to endure what our dialysis patients go through,” said Cosma.

“The people of Hāna were steadfast in their grassroots effort. They helped federal officials to really experience their circumstances and government then agreed to serve their special need,” said Kim Birnie of the Native Hawaiian health organization Papa Ola Lokahi.

In the last few months, Medicare and government parties have moved concertedly with service provider Liberty Dialysis to implement an innovative plan first hatched by Madge Schafer of the Governor's office in discussions with the Hui Laulima O Hāna. Under this arrangement, patients will come to the communal home, where they will have individualized dialysis machines and a private bedroom for the duration of their treatment; at the same time, professional caregivers and health educators will be on hand to assist when needed.

As Cosma has always hoped, 'ohana will be welcome to be part healing process. “From the beginning, we envisioned a place of nurturance so that people in dialysis would never have to feel forgotten and alone,” she said.

A county-controlled-home in the Wakiu area of Hāna has been selected as a location for the communal home. The roomy vintage structure—a familiar landmark to Hāna residents, poses some technical problems, though. An executive order stipulates use of the structure be limited to a physician's residence for the Hāna Community Health Center. Maui Mayor Charmaine Tavares has sent a letter of request to the Board of Land and Natural Resources to lift the order and has also given notice to the home's current tenants to vacate the premises by the year's end. A spokesperson for the Mayor said she expects the site issues will be resolved by late January. The County is also providing $105,000 in funding to make needed infrastructure improvements to the home to ensure compliance with various regulations.

Three patients, including Lehua Cosma's mom, are ready to use the home as soon as it opens. Meanwhile, there is widespread agreement in the medical community—which is seeing an explosion of diabetes cases statewide – that the Hāna residents have accomplished something important for all Hawai'i. Suzette Kaho'ohanohano, a dialysis nurse for Hui No Ke Ola Pono, Maui's Native Hawaiian Health Care System, said Hāna's high profile advocacy has drawn attention to the silent dangers of a disease that often creeps up on people without producing any symptoms in the early stages. The lack of awareness of type 2 diabetes has particularly hurt Native Hawaiians in geographically isolated areas with less access to diabetes screenings. “They don't know they have the disease until it progresses to the point where dialysis is necessary to survive,” said Kaho'ohanohano.

“Hāna people have gotten diabetes into the headlines and sent the lifesaving message to know your numbers,” said Kaho'ohanohano. Translation: get the simple blood sugar test, which will tell you if you are developing a diabetic condition (see insert).

Guy Lay said that getting the communal home for dialysis in Hāna is just part of a bigger plan for Hawaiians to return to the healthy Hawaiian traditions of “working their own land and satisfying their sweet tooth by eating mangoes from the trees—not junk from a fast-food restaurant.” He says he feels the entire Hāna community has been empowered by their success in keeping dialysis patients not only in their hearts but physically in their homes. “We were used to feeling we were off the radar. Now we know, reach out and make a difference.”