A moving argument for a more focused, humane, and efficient system for conducting medical research.
The story of a painful but inspiring search for a cure for a fatal disease.
Dockser Marcus, a Pulitzer Prize–winning Wall Street Journal reporter, had finished a series on advances in cancer therapy when she endured the death of her mother to a rare cancer for which no treatment existed. The author’s research revealed that activists had often pressured the Food and Drug Administration to pay attention to diseases such as AIDS and allow community participants on hospital and government advisory committees. It was an effective approach, but the author found that the scientists called the shots. They were the experts who would design experiments and work at their own, careful pace. This lugubrious system has worked miracles, but it’s too slow if a loved one is sick. Dockser Marcus discovered others with the same experience who had organized to work with and even guide researchers. They called themselves “citizen scientists.” The author concentrates on the fight against the rare genetic defect Niemann-Pick disease type C, which affects only about 200 individuals in the U.S. and 500 globally. Often healthy at birth, affected children “progressively” lose the ability to walk, talk, and eat; most die by age 19. Dockser Marcus introduces us to the families, children, physicians, researchers, and FDA officials. Almost all are sympathetic. Rather than merely lobbying or raising money, parents have come together to search for treatments and suggest lines of research. Fiercely motivated, they have educated themselves, devouring medical journals so obsessively that some have written articles for these same journals. They have convinced researchers and government agencies to launch studies and then cooperated closely, not only volunteering their children, but also gathering far more data than the usual parent. The author ends her expert mixture of reportage and storytelling on a somewhat hopeful note. Promising treatments are in the pipeline, but there have been numerous bitter disappointments, and many affected children have suffered serious complications during trials.
A moving argument for a more focused, humane, and efficient system for conducting medical research.Pub Date: Feb. 14, 2023
ISBN: 9780399576133
Page Count: 256
Publisher: Riverhead
Review Posted Online: Jan. 20, 2023
Kirkus Reviews Issue: Feb. 15, 2023
BOOK REVIEW
BOOK REVIEW
A moving meditation on mortality by a gifted writer whose dual perspectives of physician and patient provide a singular...
A neurosurgeon with a passion for literature tragically finds his perfect subject after his diagnosis of terminal lung cancer.
Writing isn’t brain surgery, but it’s rare when someone adept at the latter is also so accomplished at the former. Searching for meaning and purpose in his life, Kalanithi pursued a doctorate in literature and had felt certain that he wouldn’t enter the field of medicine, in which his father and other members of his family excelled. “But I couldn’t let go of the question,” he writes, after realizing that his goals “didn’t quite fit in an English department.” “Where did biology, morality, literature and philosophy intersect?” So he decided to set aside his doctoral dissertation and belatedly prepare for medical school, which “would allow me a chance to find answers that are not in books, to find a different sort of sublime, to forge relationships with the suffering, and to keep following the question of what makes human life meaningful, even in the face of death and decay.” The author’s empathy undoubtedly made him an exceptional doctor, and the precision of his prose—as well as the moral purpose underscoring it—suggests that he could have written a good book on any subject he chose. Part of what makes this book so essential is the fact that it was written under a death sentence following the diagnosis that upended his life, just as he was preparing to end his residency and attract offers at the top of his profession. Kalanithi learned he might have 10 years to live or perhaps five. Should he return to neurosurgery (he could and did), or should he write (he also did)? Should he and his wife have a baby? They did, eight months before he died, which was less than two years after the original diagnosis. “The fact of death is unsettling,” he understates. “Yet there is no other way to live.”
A moving meditation on mortality by a gifted writer whose dual perspectives of physician and patient provide a singular clarity.Pub Date: Jan. 19, 2016
ISBN: 978-0-8129-8840-6
Page Count: 248
Publisher: Random House
Review Posted Online: Sept. 29, 2015
Kirkus Reviews Issue: Oct. 15, 2015
PERSPECTIVES
A philosophically rich critique of state violence and mass apathy.
An Egyptian Canadian journalist writes searchingly of this time of war.
“Rules, conventions, morals, reality itself: all exist so long as their existence is convenient to the preservation of power.” So writes El Akkad, who goes on to state that one of the demands of modern power is that those subject to it must imagine that some group of people somewhere are not fully human. El Akkad’s pointed example is Gaza, the current destruction of which, he writes, is causing millions of people around the world to examine the supposedly rules-governed, democratic West and declare, “I want nothing to do with this.” El Akkad, author of the novel American War (2017), discerns hypocrisy and racism in the West’s defense of Ukraine and what he views as indifference toward the Palestinian people. No stranger to war zones himself—El Akkad was a correspondent in Afghanistan and Iraq—he writes with grim matter-of-factness about murdered children, famine, and the deliberate targeting of civilians. With no love for Zionism lost, he offers an equally harsh critique of Hamas, yet another one of the “entities obsessed with violence as an ethos, brutal in their treatment of minority groups who in their view should not exist, and self-decreed to be the true protectors of an entire religion.” Taking a global view, El Akkad, who lives in the U.S., finds almost every government and society wanting, and not least those, he says, that turn away and pretend not to know, behavior that we’ve seen before and that, in the spirit of his title, will one day be explained away until, in the end, it comes down to “a quiet unheard reckoning in the winter of life between the one who said nothing, did nothing, and their own soul.”
A philosophically rich critique of state violence and mass apathy.Pub Date: Feb. 25, 2025
ISBN: 9780593804148
Page Count: 224
Publisher: Knopf
Review Posted Online: Dec. 14, 2024
Kirkus Reviews Issue: Jan. 15, 2025
BOOK REVIEW
BOOK REVIEW
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