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Inland Journal, Feb. 20, 2020: Coronavirus And Rare Diseases

Centers for Disease Control

Today on Inland Journal, the coronavirus and rare diseases. Later, we’ll talk with a Spokane woman who has a daughter with what is considered a rare disease and her passion to help other families who have their struggles with rare diseases.

But first, we learned Wednesday that, any day now, the federal Department of Health and Human Services will send five people with the coronavirus to Providence Sacred Heart Medical Center. Those people have tested positive for what is now known as COVED-19, or the 2019 coronavirus.

Providence officials say Sacred Heart was picked because it has secure airborne infection isolation rooms. It’s one of 10 hospitals in the nation that will serve this function.

Scientists all over the world are working to learn what they can about this version of the coronavirus. We called Krisztian Magori, an assistant professor of biology at Eastern Washington University. Magori and a colleague will speak about the coronavirus next Wednesday at 6 pm at Spokane’s Southside Senior Center. Magori is a disease ecologist. He studies the organisms that carry diseases and those that pass them from one species to another.

“It is certainly a new pathogen that jumps from some other host, mostly bats in Wuhan, and starts it spreading. However, we need to put it in perspective with other diseases that also spread. When we hear coronavir  us, most people have not heard this term before," Magori said.

He says there’s a joke on the Internet that equates the coronavirus with a Mexican beer with a similar name.

Krisztian Magori: “But we have coronaviruses that we all probably have gotten before. The common cold is caused by some kinds of viruses and several of those are coronaviruses. They are the same group of viruses and we don’t exactly when it happened and they are what we call endemic. They keep going around in people, so, in that sense, this pathogen is just another one of those viruses. But, because we see how quickly it spreads and how severe the symptoms can be and how many people are getting infected, it causes a larger concern. If we want to put it in perspective with other pathogens in the U.S. right now, we have a larger than normal flu epidemic going on right now in the U.S. that we don’t talk about a lot, but up to this point, 14,000 people have died in the U.S. during this current flu season and 26 million got infected, whereas, with this coronavirus, we only have 15 cases in the U.S., all of them quarantined. We didn’t have any indication, even though this outbreak began in December, that we would have an ongoing outbreak in the U.S.”

Doug: “So, does it tell us that flu virus is more dangerous to us than this particular coronavirus? Or is that a leap in logic?”

Krisztian Magori: “It’s complicated because flu doesn’t kill as many people proportionally. For the flu, it’s about 0.1% of people who get infected with the flu die in the U.S., in general. With this virus, the percentage is somewhere between 2-3%; I think the latest I heard is 2.3%. However, Anthony Fauci, the head of the NIH, was talking about how those estimates might be too high because they were mostly based on cases that happened at the epicenter of the outbreak in Wuhan, where there are so many cases that the health system might be completely overrun and there might be people who just don’t get the required support to recover. In other countries, like the U.S., the same disease might have a much lower mortality rate, especially if they are prepared and we know what we are doing and we have enough supplies.”

Doug: “Why has this been so difficult for China to deal with?”
Krisztian Magori: “ I’m not trying to minimize it. It is contagious, so in this sense, it’s hard to control. The Chinese government has really done extraordinary steps to try and really control this outbreak, shutting down large metropolitan cities, like they did, is almost impossible to imagine in any other country than China. I don’t think it would ever work in the U.S. So they’ve done everything they could, but they has already been so much transmission happening within the city before they shut them down that, by that time, the cat was out of the bag. Right now, I think what we’ve seen is that shutting down those cities and putting in preventive steps to avoid further transmission, we’re hopefully getting to the point where the number of cases, the new cases, is hopefully to start going down in the next couple of weeks and so we can see an end to the outbreak. But I want to emphasize, at this time, these same kinds of infections might have happened in the past, say 50 years ago, and nobody would have noticed because we didn’t have the technology to test people. Right now, it’s very easy to get a test, it’s called PCR, that emphasizes the DNA of the virus and can test people if they have it. Fifty years ago, we didn’t have anything like this. All we would know is that we have more people who are sneezing and coughing than before and we would think it’s another cold outbreak and some people seem to be dying as a consequence, but we wouldn’t have known that there’s something going on.”

Krisztian Magori is an assistant professor of biology and biostatistics at Eastern Washington University. Magori and a colleague will speak about the coronavirus next Wednesday (Feb. 26) at 6 pm at Spokane’s Southside Senior Center.

Another view of the coronavirus now, this time focusing not on the biology, but on how we as a society view diseases like this. Kari Nixon is an assistant professor of English at Whitworth University. She studies medical humanities.

Kari Nixon: “One way that I think is really interesting, and there’s been lots of good work done by medical humanities scholars on the way that we define what’s an epidemic versus endemic is. The quick and dirty version that you can summarize those arguments is to say what we call an epidemic depends on how much we care about the people it affects. There’s really good evidence, for instance, that polio was endemic to the human race since time immemorial. I think we have evidence on hieroglyphic tablets portraits of leaders that clearly have polio. But it was when it began to affect white, affluent, middle class Americans in the mid-century that it was suddenly a panic and we dubbed it more of an epidemic. I personally felt that I saw this in Dallas when we had a few Ebola cases there. I was living within walking distance of the hospital where they all were. I drove by, every day, the nurses’ apartments and I was watching as the decontamination crews emptied their apartments. We have a tendency to think that Ebola, or to treat it as naturally-occurring in low levels in certain parts of Africa, it’s treated as endemic, yet when it came here, we had three cases in Dallas, it was an outbreak, which I would say is a good enough word to say we’re treating it like an epidemic, whether or not epidemiologists are calling it that.”

Doug: “So as we see these pictures of people in China, in Wuhan, a city of about 11 million people, streets are pretty sparse and people are walking around with masks on their faces, does that take away from how we view it because they’re so far away? It’s not that thing that is knocking on our door.”

Kari Nixon: “Precisely and that’s also the double bind, although we haven’t yet said the coronavirus is endemic to China, it’s too new to be endemic, that attitude defines a lot about how Americans look at disease globally. That disease is over here and thank God it’s not over here with us, and yet we have, as was the case in Everett, I guess, and there was mass hysteria. We have this fantasy of diseases being natural to everyone but us in America and that’s just not true. Diseases will call our bluff every time because, spoiler alert, viruses don’t care about our national borders that we’ve made up. I think that’s why have the panic about these relatively small cases because we’ve lived with our heads buried in the sand in this fantasy world, where we’ve distanced disease imaginatively, so when it comes over here in even small amounts, we kind of go to the other extreme and panic all of a sudden because we thought we were keeping these things imaginatively at bay.”

Doug: “So what are the lessons we should learn from this?”

Kari Nixon: “The way that I look at it in my first book that’s forthcoming in June, where I track the 19th century roots of this legacy, and I start there because this is when we first had the pervasive idea that diseases were contagious, so I get to the beginning of that idea. When we indulge in the fantasy that a disease is a disease of those people over there, however we’re defining that population at the time, that creates its own spillover. People want to talk about the spillover events from animal consumption in some parts of the world. I say we create spillover events when we deny the possibility that a disease can affect all of us and that somebody’s else’s problem is indeed our moral responsibility to care about. I think we saw this with the AIDS crisis in the 1980s. The more we said that this was a disease of a certain population, the more its impact spread and affected more and more people outside the population we were claiming it affected. In the 1880s, it was syphilis. Same way. There were all these laws trying to limit sex trafficking because people really believed that only sex workers spread that disease, not, say, the men who were their customers. Again, microbes will call your bluff, because it doesn’t work that way.”

Kari Nixon is a medical humanist, an assistant professor of English at Whitworth University.

And now to the practical effects of the coronavirus for some people in the Northwest, including business owners who ship their goods to Asia and oyster growers. Here’s correspondent Anna King.

China is usually the world’s major manufacturer. So shipping revolves around the high-value products it sends around the world. When shipping containers are emptied on U.S. ports, they’re refilled with produce, lumber, grain, soy and meats. But right now, there are few containers coming out of China. And what is being shipped over there is languishing in ports without any workers to unload the products and take them to markets.

“Right now it’s a crisis," said Peter Friedmann, who leads the Washington, DC-based Agriculture Transportation Coalition. He says Chinese ports are even out of plugs for refrigerated shipping containers. So containers are stacking up and perishables are rotting inside.

Usually, at Wiegardt Brothers on Washington’s Coast they’d be shucking 40 to 45 hours a week. Now, owner Kenichi Wiegardt says he’s worried about making payroll.

The problem is, shipping from China has dropped dramatically. And that means there aren’t ships to carry US goods back across the Pacific.

Usually every Monday, Kenichi Wiegardt ships eight pallets of fresh-jarred oysters to a customer in Hong Kong. But this week, he’s only got one to ship.

Standing in his large cooler, Wiegardt says even orders to U.S. and Canadian Chinatowns are half of normal because people are afraid of catching the virus.

“The Chinatown areas in the cities, there is nothing going on. People are staying home, people are staying in," he said.

Northwest geoduck clams and dungeness crab fishers are hurting too. As a fifth-gen oysterman, Wiegardt hopes he won’t be the last in his family making a living on the mud of Willapa Bay.

“My youngest has definitely shown a lot of interest already and he’s only 9 years old, so ... fingers crossed!” he said.

I’m Anna King, in Nahcotta, Washington.

And now to rare diseases, of which there are officially about seven thousand, according to Orphanet, which bills itself as the website for rare diseases and orphan drugs. What happens when your child or your spouse or a parent is diagnosed with a disease of which little is known?

That happened with Mary McDirmid, a Spokane financial planner, and her husband. They have two children, Charlie and Ruth. Ruth is three-and-a-half years old.

Mary McDirmid: “Ruth’s rare disease is called tuberous sclerosis complex, TSC for short. The non-super medical version is she’s missing DNA that fights tumors. Tumors will form in her major organs, heart, brain, kidneys, lungs, and she has some on her skin. Seizures are a byproduct of the disease and also tumors in her brain can cause them.”

Ruth has had surgery at least once to remove tumors.

“Developmentally, she’s probably a good year behind where she should be. That affects her daily. If she has a seizure, that’s another category of how we see how that day’s going to go. Doctors appointments, all of that. I would say that she’s affected daily," McDirmid said.

And because Ruth is affected, her parents and sister are as well. The McDirmids have found whatever information they can about Ruth’s disease and how it has been treated. Mary McDirmid says the disease has been known long enough that some research has been done and money raised for more.

“There is a lot of overlap with ours and a couple of other rare diseases out there that have to do with tumors. There’s good movement in our alliance for rare disease work, 40 years old," she said.

So the McDirmids have something of a social network with parents in similar situations. But, she says, for others dealing with rare diseases, there’s a sense of isolation. They feel like they’re going at it alone, especially when there are no doctors nearby who know much about their conditions.

“I would really like to make a system, some kind of funnel. Most of our families have to travel to at least get a diagnosis. That’s the first step. So once you get that diagnosis and you come back home, how can we wrap around them and funnel some form in our medical system      where, ok, you have this rare disease, it’s going to touch these four specialists and this is the first one you go to and this is how this process starts, rather than throwing darts and hoping, maybe I should go to the cardiologist. Who’s the person in charge? Who’s the overarching person who when we have questions we need to email?” McDirmid said.

For the last three years, she and others in the community have sponsored a public forum about rare diseases on or around National Rare Disease Day. This year, that is Saturday, February 29. McDirmid has put together a panel discussion with someone who has a rare disease, someone related to someone with a rare disease, and a provider and other community member active in the field.

McDirmid says those gatherings are aimed at providing a sense of community for families dealing with rare diseases.

“Through all this, the ones who are asking the questions in those meetings we have or they come up to me after, those are the ones we have formed a ‘I’m doing this, you’re doing this, shall we do it together?’ There’s at least five, eight parents in Spokane that are on the board of their specific rare disease. They’re making decisions. They’re flying places to advocate. They’re doing all the things," she said.

McDirmid is active too. A few weeks ago, she testified via video uplink for a bill that would expand Medicaid coverage for people who have rare diseases.

“I am lucky enough that me and my husband can still work. I am privileged in that way. Let me be clear that I am here to represent others that aren’t as privileged as I am," McDirmid said to the Senate Health and Long Term Care Committee.

That bill doesn’t appear it’s going to pass. Meanwhile, McDirmid and others are working to build supportive community for people who sometimes feel overwhelmed.

“A long time ago we made peace with the fact that we are going to love our kids the most we can every day and whatever happens happens. That’s just the way it has to be," she said. "We have to sleep and we have to live and we have do all the things. But that’s a hard decision we have to make as a parent.”

The Rare Disease Day event will be Friday, February 28 from 11:30 to 1:30 in the Academic Center on the WSU Spokane campus. It’s free and open to the public.

We finish with another story about a rare disease, ALS, and an effort made to raise money for research to find a cure and treatments for that disease. It’s a program called Ales for ALS. Mike Shannon is the program director for the ALS Therapy Development Institute. It’s based in Cambridge, Massachusetts. But Shannon lives here.

Mike Shannon: “Ales for ALS was put together about seven to eight years ago by Mike and Cheryl Smith of Loftus Ranches, hop growing company and family down in, been in the valley over 120 years, the Yakima Valley. They’re also the parents of Bailbreaker Brewing Company, which is run by their adult children. Eight years ago, they wanted to find a way to support research at ALS Therapy Development Institute with a program that would provide hops to brewers in exchange for some percent of proceeds from the brewing of that beer going back to support the drug development research at the ALS Therapy Development Institute. Cheryl’s family is afflicted with Familial ALS, so they had generations of people that have the disease and by funding the lab, the hope was and still is to expedite treatments and therapies. There is more progress in the last decade than there was in the previous two, so we’re optimistic about that, but the program itself has grown from about 60 brewers to, this year, there will be over 300 and we hope this year, by adding four brewfests nationally we’ll be closing in on a million dollar program annually.”

We’ll have an Inland Journal podcast next Tuesday that looks at ALS and one of the Spokane area breweries that is creating a beer especially for Ales for ALS.

Inland Journal airs every Thursday on Spokane Public Radio. The podcast is available anytime at spokane public radio dot org. You can subscribe to the podcast at Apple Podcasts, NPR One or Google Play.