Dialysis trip takes toll in Hana

Posted on: Sunday, September 7, 2008

Dialysis trip takes toll in Hana
For some, long journey to Wailuku for treatment is a 10-hour debilitating ordeal

By Christie Wilson
Advertiser staff writer

HANA, Maui — It's 3 a.m. when Cecelia "Cece" Park and husband Andrew Sr. emerge from their home into the damp, dark Hana night to begin their long drive to the Maui Dialysis Facility in Wailuku.
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It's a 114-mile, five-hour roundtrip, most of it on a winding two-lane highway notorious for its sheer cliffs and harrowing curves. The couple make the taxing journey three times a week because Cece, 66, has diabetes and her kidneys are failing.

"We just gotta do what we gotta do," she said.

It takes 10 hours for another Hana kupuna, Francis "Uncle Blue" Lono, to ride a Maui Economic Opportunity bus to the Wailuku dialysis facility, undergo treatment and return home.

Lono, who works at the National Tropical Botanical Garden's Kahanu Garden, was diagnosed with diabetes six years ago.

Like the small number of Hana residents who need dialysis to survive, Lono's life is scheduled around his thrice-weekly trips to Wailuku. The ordeal is so exhausting that he and the others spend the days when they are not in dialysis recovering their strength for the next visit.

"I love to throw net and pick 'opihi but I cannot do those things anymore," said Lono. "I'm so tired that in between I have to rest."

The routine proved too wearying for retired Hana High School custodian Rosaline Moiha, who died at home June 9 at age 74.

Her children took turns driving "Auntie Roz" to her dialysis appointments, disrupting their own lives and incurring major expenses such as gas and vehicle repairs.

For son Melvin Moiha, that meant getting only a couple hours' rest between the time he got off from his maintenance job at Hotel Hana-Maui at 3 a.m. and starting the drive to Wailuku with his mother.

While in town, Melvin would pick up her medication, run other errands and try to nap in his van while his mother underwent dialysis before heading back to Hana in time to report to work at 5 p.m.

"It was hard, but no more. I miss her," he said.

Melvin, 53, has had type 2 diabetes for more than 20 years and hopes to avoid his mother's fate. He gets regular checkups, is walking more and tries to watch his diet, something he admits is a challenge in a community where food plays an important social role.

"So far, so good. Everything's normal," he said.

Native Hawaiians have the state's highest rate of diabetes, the leading cause of end-stage renal disease.

In the remote East Maui district, where more than half the estimated population of 2,500 is Native Hawaiian, diabetes — and the lack of dialysis facilities — is exacting a steep toll not only on patients but on their families and the close-knit community as a whole.

"Everybody knows somebody who's got it," said Cheryl Vasconcellos, executive director of Hana Health. "Every man, woman and child is at risk for diabetes."

Hana Health, a private nonprofit healthcare center, sees 70 patients for diabetes management and runs other programs to improve the community's health, such as the 10-acre Hana Fresh Farm that has increased the availability of fresh fruits and vegetables.

With only a handful of patients needing dialysis at any given time, Hana Health cannot afford to run a full-fledged dialysis center, according to Vasconcellos.

"The numbers have always been small and the cost of providing any kind of specialized service is huge; you don't have the economy of scale," she said.

Undeterred by such obstacles, Cece Park's daughter, Lehua Cosma, founded Hui Laulima O Hana four years ago to spearhead the effort to bring dialysis treatment to Hana.

She said three Hana residents are receiving dialysis treatment and two more are expected to join them soon. Dozens more are likely candidates, as diabetes, hypertension and other ailments cut through the community, Cosma said.

Undergoing dialysis at home is not an option for many Hana residents, according to Cosma, because they live in older residences that may not be suitable and lack storage for the equipment. Privacy is another issue because patients often share a home with extended families.

Hui Laulima O Hana wants to open a central location where patients can undergo treatment using their home dialysis equipment.

"If we could do it in a home we would have done it a long time ago. We felt that it was nicer to have it in one home where there's privacy and they're not alone and they can get help from a professional caregiver," she said.

A number of residents, some with healthcare experience, have agreed to undergo training to assist the patients, Cosma said, and the hui has raised money to pay them for their time. The group also successfully lobbied to get the County Council to earmark $50,000 for start-up costs.

Liberty-Dialysis Hawai'i, which operates the Maui Dialysis Facility and others around the state, has pledged to provide equipment, training and support.

Jane Gibbons, executive vice president of the Liberty's Hawai'i Region, said she is unaware of any similar type of communal arrangement for dialysis patients.

"What's unique about Hana is that it's the community that is stepping up to offer to learn dialysis to be the support person for home dialysis for unrelated people," she said.

The Centers for Medicare & Medicaid Services is prepared to approve the arrangement as long as issues such as infection control, water quality and emergency plans are resolved, said spokesman Jack Cheevers.

He said officials believe the set-up would be a first of its kind in the nation.

Cosma said Hana's experience could benefit other patients with end-stage renal disease who live in remote areas that lack nearby dialysis facilities.

"This could open up the doors for many more rural communities. I see it as a model for other communities going through similar situations," she said.

The search for a location remains a stumbling block to the hui's plans.

Hui Laulima O Hana has its eye on a plantation-era house used as a physician's residence by Hana Health.

The state-owned property was placed under county control under a 1927 governor's executive order stating the land must be used specifically as a residence for a county physician, according to state Department of Land and Natural Resources spokeswoman Debbie Ward.

Ward said the county may request that the Board of Land and Natural Resources ask Gov. Linda Lingle to issue a new executive order allowing broader use of the property for healthcare purposes.

Although she didn't touch on the location issue, Lingle did express support for the proposal for a communal dialysis setting in Hana in a July letter to the Centers for Medicare & Medicaid Services.

Vasconcellos said the physician's house is a valuable asset to the health clinic, which doesn't pay rent on the property, because it is a recruitment incentive and keeps the doctor close by for emergencies.

"We want to be sure the doctor is located with 10 minutes or so of the clinic in case someone comes in with chest pains in the middle of the night," she said.

Cosma said the residence was vacant until a Hana Health physician and her family moved in last year, after Hui Laulima O Hana had made a push to lease the property and secured $5,000 from the county for renovations.

Vasconcellos said the health center is willing to give up the house if alternative accommodations can be found that are affordable and nearby.

Mayor Charmaine Tavares did not return several e-mails and phone calls from The Advertiser seeking comment on whether the county would lease the property to the hui if all other approvals are in place.

Cosma remains hopeful her mother and Hana's other dialysis patients will live to see the day when treatment is available close to home.

"We've had people who died because they couldn't take it anymore," she said. "It would be a blessing for the whole community, not only for those needing dialysis but for all the aunties and uncles and for all the generations."

Reach Christie Wilson at cwilson@honoluluadvertiser.com.

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