I met Jason Karlawish at a book event for Frank Bill. He’s a physician and the author of Open Wound: The Tragic Obsession of Dr. William Beaumont, based on true events which occurred on the American frontier. Jason teaches medicine, medical ethics, and health policy, and writes frequently about these issues and how they affect us. Voting rights and the elderly. Patenting genes and medical discoveries such as biomarkers. I invited him to put his suede-patched elbows on the mahogany over a drink to chew the fat about all these things.
TP: Welcome to Belly Up to the Bar, Jason. What can I get you?
JK: Darkest ale you’ve got.
TP: Then I’ll pour you an Abita Turbodog. Now, let’s talk about OPEN WOUND. As a fan of weird history, I’d heard of the tale of Dr. Beaumont and his patient. Would you recount it for our readers?
JK: Yes, this is weird history. In June of 1822, on the remote Mackinac Island, a young French Canadian fur trapper named Alexis St. Martin was at the wrong end of an accidental shotgun blast in the American Fur Company Supply Store. He suffered a horrible wound that opened up a hole into his chest and stomach, exposing lung and spilling out his morning meal, but Alexis was a fortunate young man. Dr. William Beaumont, the island’s only physician, came to his aid. Beaumont, an assistant surgeon in the US army, had experience with gunshot wounds from his service as a surgeon’s mate in the War of 1812. Alexis survived.
But after months of slow but certain recovery, he was left with a deforming injury: a hole into his stomach. Unless Dr. Beaumont kept the hole plugged with a wad of lint, whatever Alexis ate or drank – this pint of ale, for instance – spilled out.
Something happened. Dr. Beaumont came to see his patient as someone, something, that was different than simply a patient well-cared for. His wound became a kind of frontier to explore. Although Beaumont had no training in research, no expectation to do research, he recognized that his patient’s wound was the object of his success. He could study gastric digestion and, in doing so, advance science and also a career that, to date, had been marked by hard work but small rewards. What follows is Dr. Beaumont’s tragic obsession and one of the oddest doctor-patient relationships.
Open Wound is a novel but it’s based on true events — sort of Blood Meridian meets The Immortal Life of Henrietta Lachs.
TP: I can see why you were drawn to this one. It sounds like something that couldn’t happen today. Could it? Or would the poor fella with the hole in his gut be patented by Big Pharma?
JK: Today, in the US, I doubt a person would suffer such a permanent hole in his side. And yet, patients remain the source of great profit. A patient with a gene or protein or tissue that has value is like gold and the scientists who discover that value will transform it into property and they will “monetize” it. Don’t you love that word?
TP: Soon we’ll all be monetized, and told to like it. It makes me wonder if we’ll see health insurers asking patients to surrender their rights to any discoveries made with their DNA or their cells before treatment, someday. What dangers do you foresee for patients in the coming years?
JK: In fact, right now, patients have no claim to ownership of discoveries made from their tissues. The courts have weighed in on that. The “bios” is the new frontier for ownership and profit. Just as American land was in the 19th century.
What is interesting is how the courts are starting to push back on patents on discoveries of nature, such as claims to own genes or proteins that categorize people into states of risk. The courts recognize that no one can own a law of nature. Not the person in whom that law was observed and not the person who observed the law. Prometheus discovered fire, he did not invent it. No patent there. Just the punishment for stealing it from the gods.
TP: You’ve also written about treating dementia. Which next to ALS (Lou Gehrig’s disease) is the ailment which terrifies me the most. Are the treatments promising? I’ve had several relatives with dementia, but their doctors never recommended treatment. It’s still seen as a side effect of aging. Will this reach epidemic proportions, with our growing lifespan?
JK: I’ve done a lot of essay writing on this and some of that is on my website www.jasonkarlawish.com. The most common cause of dementia is Alzheimer’s disease and the longer we live, the more likely we are to get it, especially after age 70. In this last century, developed nations such as the U.S. and Japan have experienced an increase in life span that is without precedent. The result? We have more people living more years, which means more people with brain failure because of Alzheimer’s disease.
The funny thing about the epidemic is that we have some control over how big it is. That control depends on how we define it. If we say that older adults who have essentially normal cognition but a brain scan that shows Alzheimer’s pathology, that they have Alzheimer’s disease, then we can overnight explode the prevalence of the disease.
The more we know about Alzheimer’s, the less we understand. I am, for example, fascinated by studies that show how most brains of persons who are demented have, not only the characteristic plaque and tangle pathology of Alzheimer’s disease but they also have other pathologies, or how as many as a third of persons with Alzheimer’s dementia don’t in fact have detectable plaque on brain scans.
We’re likely dealing with many diseases here and so we’re in for a long march to discover an effective treatment.
TP: Writing historical fiction seems a different tack for a physician. Thrillers seem to be the norm, though Josh Bazell’s fiction defies easy description (other than “awesome”) and Glenn Gray uses his medical knowledge to springboard into the unique and bizarre. Medical history is fertile ground for ideas. What do you see in your writing future?
JK: I’m fascinated with how risk is transforming medicine. The doctor patient relationship is moving from the bedside of the sick patient, to the desktop of the client at risk. I see these events as part of a larger story of what I call “actuarial capture” – the quant boys and girls rule the world. Look what they did to American banking and finance. They almost took down the world’s economy. So I’m working on a story about all this. It’s a dark comedy that starts something like this….
America’s greatest industry, healthcare, has collapsed and the news reports give the angry and confused residents gathered in the Fox Run Retirement Community’s Commons Room someone to blame—Doctor Apsara Everett, a Vietnamese-American refugee turned celebrity physician—but what the news does not report, yet, is that one of their fellow Fox Run residents, the quiet and solitary Doctor Robert Fane, is her father, and that why her career crashed and Fane family fell apart are part of a larger story of the corruption of American medicine, freedom, and a nation seduced by risk and numbers.
TP: I like dark comedy, and I think anyone who deals with our health care system would love to read about the reality behind the mess we see as the final consumer. Okay, Jason. Death row time. Or, terminal disease in your case, Doc. The end is near. Pick a book, a movie, an album and a last meal.
JK: So many titles to pick from – Blood Meridian, Lolita, Let the Great World Spin — but I think I’ll go with the book that has stayed with me the longest. Why? That means the book still has something to say to me. A good book speaks to you, changes you. A great book keeps on doing that. It’s a relationship. I’ll read, yet again since I first read it in college, some 25 years ago, Flaubert’s Sentimental Education. Yes, it’s a stepchild to his “best seller” Madame Bovary, but it’s captivating tale of young men and women, free and able to make of their lives as they desire, and yet failing miserably at it.
I’ll take a break from this uplifting tale and to listen to Radiohead’s In Rainbows or watch anything by the Cohen brothers and nibble just a few cheese crackers while I drink—yes, I’m lovin’ this ale—but I’ll go out with a case of Chateauneuf-du-Pape.
TP: Thank you for dropping by, Jason. Open Wound sounds fascinating, and I look forward to your next.