Clinic on front line of asbestos disease treatment

LIBBY - Getting a handle on the number of people who have died from asbestos disease linked to the W.R. Grace vermiculite mine has been a tough if not impossible task.

"Numbers are hard to come by," said Dr. Alan Whitehouse, a Spokane pulmonary specialist who has treated Libby patients for years. "Doctors are notoriously poor about coding death certificates."

It doesn't help that those exposed to the toxic dust have scattered to other parts of the country. Or that other illnesses such as heart disease overshadow asbestos disease in some patients.

Then there's the problem with what actually shows up on X-rays.

"People can be very symptomatic and not show it on X-rays," explained Dr. Brad Black, medical director and chief executive officer of the Center for Asbestos Related Disease, or CARD clinic.

In Whitehouse's cumulative caseload of 551 asbestos-disease patients since 1989, he has counted about 50 to 55 deaths.

Late in 1999 the Seattle Post-Intelligencer reported that 192 people had died from Libby-related asbestos disease.

On Memorial Day this year, Libby townspeople put up 226 white crosses to honor those they know have died from the disease.

The mission of Black and Whitehouse, though, is to focus on the living, not the dead. The CARD clinic has been caring for 1,000 Libby asbestos patients and Whitehouse has 500 patients.

When Whitehouse semi-retires Jan. 1, his caseload will merge with that of the Libby clinic and he will see patients two weeks a month there.

The doctors routinely field inquiries from potential victims around the country, such as a Salt Lake City woman who once worked in a Libby chiropractic office.

"At least now there's a place to ask questions," said Pat Cohan, a nurse at the clinic. "In the beginning, there was just chaos and fear."

Whitehouse added, "There's still a lot of fear, fear of the unknown."

The Spokane expert's warnings were ominous when he addressed the Kalispell medical community in September 2000.

"There's a reservoir of people [who were exposed to asbestos] from the 1970s and 80s who have not manifested themselves," he told Kalispell doctors. "I think you'll see cases for 20 to 30 years."

Taking into account the latency period of 20 to 40 years for asbestos disease, Whitehouse estimates the problem will peak in Libby in the year 2015.

Tremolite asbestos, the razor-sharp fibers specific to Libby, can do damage even if the exposure is minimal, Whitehouse noted. In tests on animals, the tremolite fibers were up to 1,000 times more hazardous than chrysotile asbestos fibers, the kind typically found in building materials and pipe insulation.

"Tremolite is capable of creating a lot more disease and a higher percentage of mesothelioma," he said.

Malignant mesothelioma is a tumorous cancer of the lung cavity that can spread to tissue surrounding the lungs or other organs. The disease is the focus of a recent study by the state Department of Health and Human Services, which tracked mesothelioma cases in Montana.

"What we found was that the disease follows the transportation lines in Montana," state medical director Michael Spence said.

While there was a clear link to railroad sites, the rate of mesothelioma in Montana residents as a whole is not much higher than in the entire United States, Spence said. He expects the prevalence of mesothelioma will level off about 2020 in the United States, but in other countries with lax rules about asbestos containment, the problem will be perpetuated.

The state continues to screen Libby residents and others who travel there for testing. Spence estimated about 1,500 screenings are performed each year, with some of those second or even third screenings on potential victims. The federal Agency for Toxic Substances and Disease Registry is paying the screening bill.

The screening involves chest X-rays and a series of lung function tests.

The percentage of those screened who have shown asbestos disease symptoms is running at about 25 percent or higher.

Both Black and Whitehouse say the CARD clinic has provided healing on a couple of levels.

"We went from a time of division in the community to a lot more acceptance," Black said. "We saw the role to bring education and healing. There is a better understanding now that this is a real disease."

Mental health also is addressed at the clinic. Licensed clinical counselor and social worker Panis Hernandez "touches base" with each patient, offering whatever may be needed in the way of counseling or support services.

The CARD clinic was created "at the wish of the community," Black said. "This is a community project and we keep it focused on patients.

"We were overwhelmed," he recalled of the situation five years ago when the magnitude of the asbestos problem came to light. "To move ahead, we needed a plan."

Clinic organizers called upon Bob and Vicki Munson to help organize the nonprofit board. Bob Munson had successfully founded the Rocky Mountain Elk Foundation and knew his way around the nonprofit world. Both of his wife's parents have asbestosis, adding an urgency to their work.

"The community has gone through a huge crisis," Bob Munson said. "It's now exciting moving toward remedies, to move from fear to resolve."

Funding for the CARD clinic has come from W.R. Grace's annual $250,000 donation to St. John's Lutheran Hospital.

"All of that went to subsidize the CARD clinic and paid for X-rays for those who couldn't afford them," said Jeanie Gentry, director of support services for St. John's Hospital.

The clinic separated from the hospital last year to form its own nonprofit corporation. The separation will better allow the clinic to develop a planned research center.

The excitement is palpable when Black and Whitehouse start talking about the research center that will be attached to the clinic.

Tapping into the $8 million pool of economic development money at the city's disposal, the Libby City Council two weeks ago voted to allocate $250,000 for seed money to get the research center started.

The center is expected to draw researchers from around the world and will create a data bank of valuable information about asbestos disease, Black said. A bank for lung and other organ tissues also will be part of the research center.

"I am convinced we'll find something to prevent it [asbestos disease] from progressing, whether it's in 10 years or longer," Whitehouse said.

Black said the new center will promote research that benefits patients with progressive lung disease.

A scientific advisory board will oversee research activity and review proposals. There are other asbestos research centers, but not one that includes Libby-specific asbestos.

"There are 30 to 40 million homes insulated with vermiculite, so the government is interested in research here," Black said.

Features editor Lynnette Hintze may be reached at 758-4421 or by e-mail at lhintze@dailyinterlake.com