A debilitating, sometimes fatal disease caused by parasites that worm their way into the human brain is the focus of a newly created state joint task force, but some say that’s not what’s needed.

In Hawaii, rat lungworm disease, spread by slugs and snails to humans who eat raw, leafy produce, or possibly through contaminated water, has infected 58 people since 2005, killing three, including a baby, Department of Health statistics show. Of the 58 confirmed cases, 54 were on Hawaii island, three on Maui and one on Oahu. From 2005, when the Health Department began collecting data, to 2015, Hawaii has averaged five cases a year. Halfway through 2016 there’ve been four.

In addition, two older patients “who had significant rat lungworm disease and who had heart attacks were written off as dying from heart attacks,” said Dr. Jon Martell, who has treated roughly 36 to 40 cases of rat lungworm disease at the Hilo Medical Center. But he emphasized that the disease not only kills, but also can permanently cripple.

In December 2008 Graham McCumber, a 24-year-old construction worker living in Puna, went into a coma, which lasted 3-1/2 months, after contracting the disease, said his mother, Kay Howe. The parasites damaged the nerve to his left eye, causing it to turn inward. His heart rate accelerated, and he suffered with breathing, bowel, bladder and lung problems. He developed meningitis and encephalitis — swelling of the brain.

“I was told by doctors he would never survive, and if he did his brain damage was so severe he would be a vegetable,” said his mother, who quit her science and math teaching job to become his caregiver.

McCumber left the hospital in a wheelchair after four months, unable to walk for two months. Then for more than a year he was able to walk only with assistance. Although he has made significant strides, he suffers permanent neurological effects, including short-term memory problems, and difficulty with his vision and balance that caused a fall May 23 that broke his collarbone.

Fight not funded

The severity of symptoms depends on the volume of ingested parasites, Martell said. “Some folks who have their legs or arms or whatever affected are permanently weakened,” he said. “One lady has been on 24-hour care and had to be on a ventilator at night for eight years. … The worms are gone but the damage is forever.”

The Health Department and the governor’s East Hawaii liaison, Wil Okabe, announced in mid-May the establishment of a task force, after the Legislature did not provide funding for research and prevention efforts.

The disease can cause a type of rare meningitis, affects the central nervous system and can cause extreme nerve pain that can be permanent. Symptoms include headaches, neck stiffness, tingling or painful feelings in the skin or extremities, low-grade fever, nausea, vomiting, temporary paralysis of the face and sensitivity to light.

“The legislation to fund the projects that need to be done was killed,” said Martell, a task force member. “That tells me how serious the state is about doing something. Which would you rather have, a task force or the legislation to provide the money to do something?”

What is needed to prevent this disease is funding for education, research and strategies to control the vectors — rats, slugs and snails, he said. “It’s a 100 percent preventable disease.”

“The lack of funding comes from the fact that the outbreak happens to be in the Puna district,” Martell said. “That’s really easy for the Legislature to write off. If this outbreak took place in Ewa Beach, we wouldn’t be having this conversation.”

In fact, the Health Department’s website at one time called it a “lifestyle disease” due to unsanitary conditions, as in a developing country, which Howe says is frustrating and infuriating to the Hawaii island community, particularly in Puna.

A Health Department spokeswoman said the department no longer uses that characterization.

Howe, who flew to Oahu to testify at the Legislature, said, “Over here we feel pretty abandoned by Oahu. … How many people’s lives have to be ruined before something gets done? … Our pain doesn’t matter, like we’re a bunch of dirty slobs.”

Howe has become a resource and confidant for people who have the disease or a family member with it. It is financially devastating to many, she said, including her, still caring part time for her son.

Okabe said the bill would have provided about $100,000 in funding for education and research. “We were in a situation where we were concentrating on dengue, and Vector Control was fighting dengue,” so rat lungworm did not get the funding.

“The governor was interested in this particular initiative,” he said of dengue. “With dengue the state needed to be in front of this instead of waiting for it to become a big problem and become reactive.”

Okabe said he has been getting calls from the community. As a facilitator, he is bringing together doctors, specialists and Agriculture and Health department officials to address all aspects of the disease.

Raw produce

Health officials would like to know why the disease, caused by a roundworm parasite, Angiostrongylus cantonensis, is so prevalent on Hawaii island, state Deputy Epidemiologist Melissa Viray said. “We need to continue to look at exposure patterns and try to examine risk factors for the disease.”

Professor Susan Jarvi, who studies rat lungworm disease at the University of Hawaii at Hilo, might have the keys to understanding its spread.

Although rats brought the disease in 1959-60 by ship from China to the Pacific islands, the introduction of the semi-slug to East Hawaii in 2004 coincides with the sudden rise in rat lungworm disease. (The semi-slug looks like a slug with a small shell on its back.)

“That’s when we started seeing an increase (in rat lungworm disease), too, so it’s probably not a coincidence,” she said. The Health Department began keeping statistics in 2005, when five fell ill.

“Semi-slugs have been spreading around the island,” and have been on Oahu since 1996, she said.

In Hawaii people usually get sick by inadvertently eating raw slugs or snails in or on raw produce, Viray said. The U.S. Centers for Disease Control says that in other parts of the world, crabs, freshwater shrimp and frogs have been known to carry the larvae of the parasitic nematode.

The host for the parasite is the rat. An infected rat or rodent can pass the parasite through its feces. Slugs, snails and semi-slugs ingest the larvae of the parasite in rat feces and become intermediate hosts. Humans become incidental hosts often when ingesting slugs or snails while eating raw leafy vegetables.

They can be quite small and can be hidden in leaves, so the Health Department urges the public to carefully wash vegetables leaf by leaf. Jarvi said the slime has lower levels of contamination than the body but still contains larvae.

In Puna, where catchment tanks are prevalent, drinking water could be another source.

Howe, the patient’s mother, now a graduate student working in Jarvi’s lab to study the disease, said semi-slugs, slugs and snails can crawl into catchment tanks and shed parasites. If not properly filtered, drinking water can be contaminated.

Patients experience extreme stomach pain and cramps when the worms move through the intestines, Martell said. That goes away, and a few days later the worms burrow through the lining of the brain into the fluid that surrounds the brain, and patients experience nerve pain.

It typically takes three doctor visits before a diagnosis is made, and a spinal tap is the only way to confirm the disease.

Martell, the Hilo Medical Center doctor, said steroids like Prednisone and periodic spinal taps to relieve the pressure can make significant improvements.