Showing 1 - 6 of 6 annotations tagged with the keyword "Financial toxicity"

Seeing Red

Meruane, Lina

Last Updated: Jan-31-2022
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Before it happened there was the dread of it. “They were brittle, those veins that sprouted from my retina and coiled and snaked through the transparent humor of my eye,” says Lina Meruane, the first-person narrator and main character. If those veins burst, Lina could go blind. All that can be done to prevent such a disaster she’s told, “is to keep watch day by day over its millimetric expansions...keep watch over the sinuous movement of the venous web advancing toward the center of my eye.” Adding to her dread are “impossible admonitions to follow.”
Stop smoking...don’t hold your breath, don’t cough, do not for any reason pick up heavy packages, boxes, suitcases. Never ever lean over, or dive headfirst into water. The carnal throes of passion were forbidden, because even an ardent kiss could cause my veins to burst. (p. 5)
And then, “it was happening. Right then, happening” (p. 3). She had only bent over to retrieve a syringe for her scheduled insulin injection. She’s paralyzed. “I didn’t straighten up or move an inch, didn’t even try to breath while I watched the show. Because that was the last thing I would see, that night, through that eye: a deep, black blood (p. 4).

Lina is in the dissertation stage of a PhD degree at a New York City university. The story veers from this pursuit to one of restoring her eyesight. The other primary characters are Lina’s Galacian love interest and fellow academic, Ignacio, who shepherds her through this journey, her New York retinal specialist, Dr. Lekz, and her parents who are both physicians—her father a cardiologist, her mother a pediatrician—practicing in Lina’s native country, Chile.

Soon after the bleeding incident, Lekz tells Lina that at least a month would be needed for her eyes “to clear up so I can take a look at this mess” (p. 32). “Weren’t you going to go to Chile to see your family? Go to Chile. Take a vacation” (p. 33). The story relocates from New York to Santiago, and from Lina’s medical problems to her familial dynamics—“I never wanted you to be my doctor, it’s enough for you to be my father” (p. 50). The visit also becomes a time for Lina—and Ignacio—to see what life might be like if she never regained full sight, and to contemplate options for such an eventuality. She had become “an apprentice blind woman” (p. 20).

Lina and Ignacio return to New York city for the hoped-for reparative surgery. The procedure produces promising signs, but Lina must wait at least the four weeks it takes for Helium gas bubbles to dissipate so Lekz can see the results. During this period, Lina tries to keep her head position down and her spirits up. Often the opposite resulted. Before four weeks passes, however,
Blood, again, in my eye. A fine thread of blood that comes from I don’t know where...I’m watching as the eye watches its thread of blood, looking at everything without ceasing my cries: I’m bleeding I’m bleeding again. (p. 142)
Futility looms, “knowing they were going to operate on me but that no cure existed” (p. 113).  Lina and Lekz consider their options. After Lina’s initial bleeding incident, Lekz had “dropped the phrase transplants in experimental stages” (p. 5). The idea stuck with her. She had spoken about it separately with her mother and Ignacio. Both were fraught conversations. Nevertheless, Lina and Lekz return to the topic.

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: History

Summary:

In a 1976 Archives of Neurology essay, the neurologist Robert Katzman successfully argued for relabeling “senility” as “Alzheimer’s disease.” He urged rejecting various forms of dementia and senility as common consequences of aging, and accepting them as a disease requiring all the attention any other important disease deserves. Now medicine and society had a problem—"The Problem of Dementia,” the famed physician Lewis Thomas called it in a 1981 essay published by the popular magazine Discover, and he noted that, suddenly, “a disease of the century” had arisen (p. 3).

Forty years on, Jason Karlawish thinks there is still a problem, but in keeping with Katzman’s call, he refers to “The Problem with Alzheimer’s.” Based on the history he covers and the experiences he shares in this book, nothing of much significance has occurred since “The Problem of Dementia” became the “The Problem of Alzheimer’s.”

Karlawish is a physician who cares for people with Alzheimer’s and a researcher delving into “issues at the intersections of care, ethics, and policy” (p. 5).  He draws on his experiences in this book, which he describes as “the story of how once upon a time, Alzheimer’s disease was a rare disease, and then it became common, and then it turned into a crisis.” Karlawish wants to answer why during the time between Thomas’ essay and the year 2010, “nothing really changed,” and how that could be the case in “the richest and most powerful nation.” (p. 6) He tells this story in four parts.

The first part concentrates on efforts clinicians and researchers were making following Thomas’ call to distinguish Alzheimer’s disease from normal aging, other dementia types (e.g., frontotemporal, Lewy body), and precursor syndromes (e.g., minimal cognitive impairment). They were looking for definitive clinical patterns, imaging studies, diagnostic tests, and pathologic markers for the disease. 

In the second part, Karlawish goes back in time to when Alois Alzheimer first found what are known today as “plaques” in the brain of a patient who had an early onset of severe, progressive dementia. He traces the attention this finding drew to eventual advances in imaging and biochemistry aimed at diagnosis. Karlawish also covers how a cascade of events over the decades following Alois Alzheimer’s finding disrupted the pursuit of a pathophysiological basis for dementia. These events included the rise and dominance of Freudian psychology; followed by two world wars; the cold war; the overshadowing of AIDS; Medicare political and funding constraints; tussles among patient advocacy groups; loss of asylums where care and research had coexisted; clinical failure of the first drug; and the continued debate over whether dementia is a consequence of aging or is a disease. 

Karlawish moves on in the third and fourth parts to cover what “we will have to learn to live with the disease so as to improve the lives of persons...to provide the care they need to live well at home...and repair the broken system” (p. 171). Success in his view requires integrated biological, psychological, and social components. He reports the progress on each of these three fronts: some failed approaches continue to fail (such as drugs targeting amyloid); some psychological interventions show promise (though at times causing moral tension); some of the social configurations engineered for Alzheimer’s patients, families, caregivers, and society have produced triumphs and some disasters. He has much to say about why and how this search must go on, but with some much-needed course corrections. 

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Summary:

Native Ohioan Brian Alexander cares a lot about his state and its many economic problems, especially as they impact healthcare. For this book, he’s an on-the-ground reporter covering the events in and around a hospital in the small town of Bryan from 2018 to 2020. He is also an in-depth interpreter, analyzing the many dilemmas of this small hospital and emphasizing that these represent parallel problems of social justice for all of contemporary American healthcare.  An opening chapter reviews some of the difficult history of this area, including economic collapse, lack of public health, lack of health insurance, and collapse of jobs in supply chains for Detroit.           

While the timeline of the story is short, it has wide breadth in local and national issues. These are illustrated by the stories  of specific people. Marc Tingle, a local contractor has a heart attack; his wife falls ill and is diagnosed with cancer. Medical bills mount up. Marc has a second heart attack and a stent inserted. He, like many others receives “rescue” medicine, not preventive healthcare, due to social or economic issues beyond their control. Similarly, we read about Keith Swihart, overweight and diabetic. He has a foot ulcer that requires surgery and later partial amputation. He has eye problems that progress to near blindness. Valerie Moreno injures her back at work but does not report it to the company, considering herself tough, but she must have spine surgery. After being laid off, she has part-time jobs, money problems, and turns to OxyContin pills. These are dramatic and painful stories.  

Many families make “just enough money to disqualify themselves…from Medicaid, but not enough to afford coverage offered by an employer or via the Affordable Care Act” (p. 242).            

Such patients illustrate a deadly whirlpool of issues: lack of routine medical care, inadequate health insurance, no national health program, a collapsed economy with no good jobs or prospects of advancement, poor nutrition, pervasive poverty, racism, sexism, and more.           

Amidst all this, we follow Phil Ennen, the CEO of this hospital (CHWC--for Community Hospitals and Wellness Centers) in Bryan. He wants to rely on his local, traditional values of “we can fix this,” but now he must confront the threats of national hospital chains, the need to cut staff and services, and the seductive lures of adding for-profit and high-tech services. Eventually, he sees no path forward and accepts the board’s invitation to retire. His replacement will have all the same problems.           

A closing section sees the arrival of Covid-19, a threat to this hospital and, of course, the nation at large. Alexander writes, “the virus seeped into the fault lines created by American pathologies. The country had changed from being an ongoing project to improve democratic society and live humanistic ideals to being a framework for fostering corporate profit” (p. 268).  

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Summary:

This illuminating and disturbing book explores how various forms of white supremacy became expressed in policies, laws, and elected officials, such as Donald Trump. Physician and sociologist Metzl details social changes in Missouri, Tennessee, and Kansas, where white Americans backed changes that, ironically, dramatically harmed them with gun suicides, school dropouts, worse healthcare, and shorter life spans. For Metzl, “Whiteness” refers not to skin color but to a political and economic system of white privilege.

Metzl's thesis that: “Trump supporters were willing to put their lives on the line in support of their political beliefs” was, in fact, a sort of “self-sabotage” (pp. 5-6). While a conservative political movement fostered white racial resentment, largely in lower-income communities, the mainstream GOP did its part by crafting policies against the Affordable Care Act, higher taxes, and restrictions on guns. An atmosphere of polarization and political stasis grew. Metzl writes: “Compromise, in many ways, coded as treason” (p. 11).  

Metzl focuses on the examples of Missouri, Tennessee, and Kansas to “suggest how the racial system of American fails everyone” (pp. 16, 20). He visits each state, leading focus groups, interviewing formally and informally, reading newspapers, and inductively formulating concepts that seem to explain the nonsensical behavior of rejecting helpful programs. For example, because “risk” in Missouri has become a code name for possible attacks by black people, white people buy guns, especially when restrictions are removed. Many white men feel that a gun (or many guns) restores their privilege, but suicide of white males, often low-income, goes up. Metzl’s statistics and charts show contrasts with other states with stricter laws and lower suicide rates. He calls for preventive medicine to lower such deaths.  

For Tennessee, the Affordable Care Act offered many benefits to poor or middle-income people, but Republicans (and especially Trump) attacked it as big government over-reach, socialism, exorbitant cost, a program that would help minority people, for example “welfare queens.” “Cost” became a proxy for the “we don’t like it,” even when the economics would be favorable for good healthcare for all. Blacks were generally in favor of ACA, but white blue-collar men swore by their independence and autonomy. Neighboring Kentucky accepted ACA, and ten graphs included in the book clearly chart the better outcomes for Kentucky in such areas as insurance coverage, death rates, and seeing a doctor.  

Metzl returns to Kansas, where he grew up and recalls the pride Kansans had in their state. Republican Governor Sam Brownback enacted massive tax cuts with large reductions to state services and school funding, an “experiment” in “epic defunding.” The GOP, Tea Party, Koch brothers, and “trickle down” theories all played a part in benefiting the wealthy financially, while minority and lower-income groups paid more. Infrastructure, such as roads, suffered. Untested charter schools collected wealthy white students, while public schools plunged in funding, test scores, and graduation rates (see 17 graphs). Since education is a predictor of health, there are and will be long-term costs to Kansans, especially for minority groups.  

Metzl attacks the “Castle Doctrine” (“a man’s home is…”) as a symbol of narcissism, individualism, and as a risk for all citizens when social structures are abandoned. He closes with some hopeful examples of social change for the better.

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

The Strand Magazine is a source for “unpublished works by literary masters.” The October-February (2017-2018) issue includes a Raymond Chandler short story that has never before been published. Chandler wrote crime fiction for the most part, and the stories usually involved the fictional detective Phillip Marlowe. This story, however, written between 1956 and 1958, centered on how American health care fails people who need it when they can’t pay for it or look like they can’t pay for it. 

In this story, a man who has been hit by a truck is brought into the emergency department at “General Hospital.” He arrives just before shift change and so the admitting clerk is already annoyed. The clerk checks the patient’s pockets for the required $50 deposit and finds nothing, so she could now send the patient to the county hospital, and that would be that. But, before she initiates the transfer, she asks a passing private attending physician to look at the patient. He sees that the patient is dirty, smells of alcohol, and would cost a lot to work up. Mindful of an admonition from a major donor that the “hospital is not run for charity,” the physician surmises the patient is “just drunk,” and agrees the patient should be moved to the county hospital. So off the patient goes.  

The next day, the same admitting clerk at General Hospital gets a call from the county hospital. She’s informed that the patient they transferred had a head injury requiring surgery, and that the patient had $4,000 in a money belt inside his undershirt. The patient couldn’t be saved, however, because of the delay involved in the transfer to the county hospital. It’s all right—he only died.



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So Much For That

Shriver, Lionel

Last Updated: Jan-18-2018
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The book opens with Shep Knacker packing his bags for his long-dreamed of “Afterlife”—his word for retirement—in Pemba, an island off the coast of Tanzania. He plans to take his wife, Glynis, and his high school aged son, Zach. This plan is not unexpected because Shep and Glynis have made many “research” trips during their 26-year marriage to find the right place (though never to Pemba). But, there were always reasons not to act on their research. An intervention was needed. Glynis is not home while he is packing because she is at some “appointment.” When she gets home, Shep informs her of his plans for the three of them to leave for Pemba, and he further informs Glynis that he’s going whether she comes or not. In response, she informs him that she has cancer—a bad one (mesothelioma); he unpacks, so much for that.

What unfurls from there is more complicated than just the challenges Glynis’s disease produces, though these are monumental challenges. Other people, too, are in need of Shep’s attention. His father’s decrepitude is advancing, his sister is on the brink of homelessness, and his teenage son is detaching from him and life in general. Shep eventually loses his job as an employee at the handyman company he once owned (“Knack of All Trades”) then sold to fund his Afterlife. There’s more. 

Shep's best friend, Jackson, who also worked with him at Knack of All Trades has two girls, and one of them has familial dysautonomia. This progressive genetic disease of the nervous system produces a constellation of medical problems that are bizarre, intense, and serious, before it ultimately produces a tragic end. The trauma and tragedy this disease inflicts in this story (and in life) encompass the entire family, in spite of the heroic efforts of Jackson’s wife, Carol. 
 
The many plot lines in this novel at times proceed independently of one another, and at other times intersect. They concern serious illness experiences and the effects they have on families and also how the American health care system can place burdens on those who need it. Nevertheless, the two families, beaten down by illness, fatigued from encounters with doctors and hospitals, and exasperated from fights with insurance companies, rally enough to make it to Pemba. The trip becomes financially affordable as the result of some narrative gimmickry involving a financial settlement of $800,000 from the company that put asbestos in equipment Glynis had used years before. They would spend the rest of their lives there, longer for some than for others.   

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