Health officials in tourist-friendly Hawaii are defending themselves from criticism that they have for years downplayed the severity of a rare, brain-invading parasite that has infected dozens on the islands, including a San Francisco couple stricken by the disease on a recent honeymoon.
A cluster of rat lungworm cases in Maui caught widespread attention last week when Eliza Lape of San Francisco and her husband, UC Berkeley journalism professor Ben Manilla, revealed they had become severely ill in January after they eloped on the island.
But researchers say the disease had been centered in poorer parts of the Big Island for years and received little notice until state health officials started investigating the Maui cases, which number half a dozen already this year.
Susan Jarvi, a professor of pharmaceutical sciences at the University of Hawaii at Hilo, started looking into the disease more than five years ago and said the state is over a decade late in alerting the community, visitors and health care providers.
"It appears to me that they've been trying to sweep this under the rug for a number of years now," Jarvi said. "I would guess they don't want to hurt the tourism industry."
State officials defended their actions, noting that of the several million tourists who visit Hawaii every year, just four have reported cases of rat lungworm since 2015.
"We realize there may be unreported cases since this disease resolves itself in many instances" without treatment, Janice Okubo, a spokeswoman for the Hawaii State Department of Health, wrote in an email. "That is something we take into consideration as we continue to research and seek better ways to identify and prevent the disease."
She said there are "no travel health advisories issued related to the recent cases, and travelers can continue to visit Hawaii with confidence."
Rat lungworm disease is primarily acquired by consuming snails and slugs that host the parasite larvae -- or by eating raw, unwashed produce contaminated by a slug. It can cause a rare form of meningitis and fatal complications when larvae invade the brain after being passed on to humans by mollusks that come in contact with rodent feces.
Lape, 57, is now nearly recovered from the infection, but Manilla, 64, contracted a harsher form of the disease and is in physical therapy for help walking and using his hands. He was hospitalized in February, spent a month in intensive care, and had operations, bouts of pneumonia, kidney problems and a blood clot, Lape said.
The couple do not know how they contracted the disease, Lape said, while noting the abundance of fresh fruit stands they shopped at on the island.
Amid the recent uptick in cases, Hawaii state legislators introduced a bill in January that would provide funding for the University of Hawaii at Hilo to research rat lungworm's prevention and eradication. The state House of Representatives passed the bill April 6, sending it back to the state Senate, which filed a notice of disagreement with the House amendments a day later.
"There are questions. Why haven't the tourists been told about this?" Jarvi said. "It should have first been addressed back in 2005. We started seeing an increase in the number of cases. Certainly by 2008 we had a number of serious cases."
Jarvi said health officials did not publicize the seriousness of the disease which, with no viable cure, has to resolve itself when the worms die. Some people who contract it lead fairly normal lives, while those with severe cases can face long-term effects such as paralysis, an inability to speak, or loss of bowel and bladder control.
Okubo said the state became aware of the disease in 2004 and generally sees between one to nine reported cases a year. Two related deaths were recorded since 2007. The department, Okubo said, invited a team from the federal Centers for Disease Control and Prevention to the islands in 2005 to help study the problem.
Last year, the state reported 11 cases, all on the Big Island. This year, there have already been nine cases -- six on Maui and three on the Big Island. Officials are also investigating four unconfirmed cases this year: three on Maui and one on the Big Island, Okubo said.
The department has held public meetings and presentations and circulated flyers on the disease, and plans to ramp up efforts in light of the Maui cases, Okubo said. But Jarvi said these recent efforts should have taken place on the Big Island years ago.
Robert Cowie, another rat lungworm researcher who runs a lab at the Pacific Biosciences Research Center at the University of Hawaii at Manoa, also said public education on the disease is lacking, but he was not as critical of officials.
"It's certainly underreported," Cowie said of rat lungworm. "The truth is probably somewhere in between ... a lot of the public aren't aware. When they do become aware, they're really scared."
Cowie said he began researching the disease during the first noticeable outbreaks in the mid-2000s, and noted that Jarvi's lab and the health department often butt heads over research funding.
The cause of the outbreak is unknown. State epidemiologist Dr. Sarah Park said in an email that officials were "unable to determine this at this time, and any suggestion would be speculation."
Jarvi, though, said years of research point to the recent migration of the invasive semi-slug to Hawaii as a factor in the rise of cases. She also said the state's tally is underreported, owing in part to the difficulty of diagnosing the disease.
Cowie, a snail biologist, said his research shows the semi-slug is a good carrier but far from the only threat among mollusks on the island. He said the focus should be on washing vegetables with water to prevent potential contamination.
Jarvi said she began researching rat lungworm after meeting in 2011 with Hawaii resident Kathleen Howe, whose son, Graham McCumber, was in a coma for three months after he was infected in 2008 at age 24.
"I had heard about it prior but was under the assumption -- the false assumption -- that it was a mild, self-resolving disease, which is what it said on the Department of Health website," Jarvi said.
Howe said she quit her teaching job when her son fell ill and doctors told her he might not survive. In 2011, Graham McCumber recovered enough to go to school -- and his mother enrolled as well to learn more about the largely unstudied disease.
She graduated from the University of Hawaii at Hilo last year with a master's degree in tropical conservation biology and environmental science and has worked with Jarvi's lab for years, focusing on community education on rat lungworm.
"This is both a Department of Health and Department of Agriculture problem, and both of them don't want to accept it," Howe said. "We've been saying it's epidemic. They've been saying no. We've been saying it's a public safety crisis, they're saying no. We feel the Department of Health is being grossly negligent."
Now five years after the illness, Howe's son still requires his mother as a caretaker, needs a service dog for balance and suffers short-term memory loss, said his sister, Caydie McCumber.
"It's frustrating," said Caydie McCumber, who lives in Oakland. "It's just sort of this really nebulous thing at this point the government needs to do something about. It's just sort of ridiculous that the government's not protecting its people."
Jenna Lyons is a San Francisco Chronicle staff writer. Email: firstname.lastname@example.org Twitter: @JennaJourno ___
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