susan cohen

Cherry Grove Collections; 2012

 

 

"In the summer of 2003, a man approached an advisory panel of the Food and Drug Administration on his knees. Deno Andrews was a supplicant. More to the point, he chose to address the committee from the height he might have stood if doctors hadn’t given him growth hormone throughout his childhood."-- from "Normal at Any Cost."

This is the first detailed account of the way in which tall girls and short kids have been experimented on for decades.

The discovery that massive doses of estrogens could stunt a girl's growth, and that human growth hormone could make a child grow faster, turned height into an industry. A cultural disadvantage became a medical problem.

The first chapter tells the story of Laura, a happy child whose doctors prescribed massive doses of DES, a synthetic estrogen, because her mother worried that Laura would never find a husband or happiness if she grew too tall. The book follows the dramatic discovery that pituitary glands harvested from human cadavers for hormone made some dwarfed children grow -- and describes the deaths still occurring decades later among former patients whose doctors unknowingly infected them with an incurable disease.

"Normal at Any Cost" chronicles how genetically engineered growth hormone, a product so profitable and aggressively marketed that it sparked court challenges and criminal prosecutions, launched the biotechnology industry. Yet, there were only a few thousand approved patients. The book describes the scene as, twenty years later, the FDA approved this product for healthy children and ushered in a new era of treating kids for height. Doctors now wield an arsenal that allows them to time and manipulate puberty, as well as to administer a variety of powerful hormones in doses far beyond what is natural or what some of their colleagues believe is safe. All for a few inches in children who have nothing physically wrong with them but where they stand on the growth charts.

"Normal at Any Cost" does what physicians and pharmaceutical companies do not -- follows up some of the tall girls and short boys, now grown women and men, whose lives changed because of these treatments.

As the new age of genetic medicine offers parents and doctors increasing opportunities to alter inherited characteristics, the temptations are only beginning.

WHAT THE REVIEWERS SAY:

"... its overtones of both 'Gossip Girl' and the Book of Ecclesiastes make it irresistible...

"Susan Cohen and Christine Cosgrove, both experienced medical journalists, know how to tell a story, and they could not have picked a better allegorical case study of modern medicine than the story of children’s height ... 'Normal at Any Cost' tells its own story with a pace and fluency sadly rare in medical journalism, and like the best in all literature, it illuminates the surrounding landscape as well." -- Dr. Abigail Zuger, The NEW YORK TIMES.

Editor's Pick, CHOICE REVIEWS:
"...This well-researched and excellently crafted book tells the story of body height adjustment from the perspective of parents, the personally affected/disadvantaged, medical ethics, and the pharmaceutical industry along with its various national regulatory overseers... Cohen and Cosgrove, both reporters, have shaped the book as a cautionary tale, warning of abuses in this rapidly growing multibillion-dollar business. However, they also empathize with all the tall girls and short boys and their worrying, well-meaning parents who all seem to become vitally interested in hormones as they seek answers and interventions from endocrinologists. Not only is this book great investigative reporting, it also manages to braid psychology, physiology, and philosophy so that readers can ponder the practical and even religious facets of this modern frontier phenomenon. Summing Up: Highly recommended."

"Two science journalists examine the fascinating history of medical science's flawed attempts to manipulate height and the ethics involved. In the first section, set primarily in the 1950s and 1960s, they discuss middle-class families who were urged to try to reduce their daughters' height before it was too late for them to be 'successful adults.' The tall girls were given estrogens to send them prematurely into puberty and force their growth plates to close. In the second half, the authors focus on the use of human-growth hormone to increase the height of naturally short children. Before synthetic-growth hormone was developed, there was a painstaking procedure for extracting it from cadaver pituitary glands. This defective process led to the spread of neurological diseases as horrible as Creutzfeldt-Jakob disease (the human version of mad cow). Interestingly, neither the growth hormone nor the estrogen resulted in systematically proven results. This startling look at medical ethics and history has implications for the future of 'human improvement' therapies; recommended for large academic and public libraries." -- LIBRARY JOURNAL


"...This history is meant as a cautionary tale, and Cohen and Cosgrove raise all the right questions: when do we cross the line from treating disease to 'satisfying desires for perfection'? can the exorbitant cost of growth hormone therapy be justified in an otherwise inadequate health system? do drug companies distort the practice of medicine? does government adequately protect the public? Because it can take decades for the ill effects of treatment to emerge, this account can only raise questions about possible threats from current practices." -- PUBLISHERS WEEKLY

"Sobering story of what parents, and doctors, will do to help short and tall children become 'normal'...Through the stories of patients and scientists in the United States and abroad, the authors examine the rise of the vast growth-hormone industry, which skyrocketed in the '80s when Genentech developed a biosynthetic hormone. By the '90s, many children whose bodies produced growth hormones were receiving still more by prescription, despite the fact that the long-term safety and effectiveness of the drugs remained uncertain. Meanwhile, complications continued to surface in women who took DES years ago. The authors question the motives of all the key players—parents, doctors, drug companies—and note that there have been many more incentives to encourage treatment with hormones than to study the drugs' long-term effects. 'Once a treatment exists, its existence becomes a reason to use it,' they lament.
Solid reporting on the reckless use of medical technology for socially dubious ends."-- KIRKUS REVIEWS

"Cohen and Cosgrove pull no punches. Medical intervention into height adjustment is nothing more than a futures gamble. Physicians, pharmaceutical manufacturers, and others who should know freely admit there is no way, except in rare instances, of predicting with any degree of certainty how tall or short a child will be at full maturity. So why, then, the mad scramble by some parents to intervene, hoping that medicating their children will assure gender-appropriate stature? That’s another thing the coauthors make clear. There is a great deal of money to be made playing on the fears of moms and dads of too-tall girls and too-short boys—by recent estimates, about $50,000 per inch, without guaranteed success. Furthermore, there has been no scientific study of the long-term effects of the treatments. Some delay puberty. Some speed it up. Some may have no desired effect whatsoever. Eye-opening reading for anyone considering these interventions." -- Donna Chavez,BOOKLIST

"Susan Cohen and Christine Cosgrove, the authors of this compelling book,tell the story of how doctors treat tall and short children, and of how such treatment has evolved during the past half-century... This book serves as a timely reminder for parents and physicians that caring for children is a sacred trust, and that the short-term and long-term well-being of the children must be considered carefully with every treatment decision for every child, every time." -- Gaya S. Aranoff, M.D.,Sharon E. Oberfield, M.D.Columbia University Medical Center, NEW ENGLAND JOURNAL OF MEDICINE

"'Normal at Any Cost: Tall Girls, Short Boys and the Medical Industry's Quest to Manipulate Height' is a gripping account of efforts over the past 50 years to "fix" children's height with hormones and other drugs. Authors Susan Cohen and Christine Cosgrove give us solid reporting, rich detail and human stories about this ongoing experiment." -- Marcy Darnovsky, PSYCHOLOGY TODAY blog, Genetic Crossroads. 6/2/2009

Women's Bioethics Bookclub Selection: "Normal at Any Cost would also make a great text for introductory high school or college bioethics courses because it manages to tackle in an accessible and compelling manner a wide range of bioethical issues from the medicalization of social problems, the pharmaceutical industry’s influence on physician education, limits of informed consent, definition of therapeutic v. enhancement interventions, to the appropriate allocation of medical resources (social justice considerations). Read it this summer.
Kathryn Hinsch, WOMENS BIOETHICS PROJECT BOOK CLUB

WHAT READERS SAY:


5.0 out of 5 stars Excellent reminder
"Very good and thought producing narrative about medicine and doctors wish to help their patients. And the unforeseen (or disregarded) consequences!
Is a "must read" for paediatric endocrinologists (my self incl.)." -- N. Thomas Hertel (Denmark), Amazon uk, June 17

"A Cautionary Tale: ...Initially, doctors only treated children whose hormone levels were out of normal range, yet eventually they began treating children who were healthy and developing within the norm, but whose parents wanted height adjustments for social / cultural reasons. In the Introduction, the authors note that they are not trying to "discourage a parent from taking a poorly growing son or daughter to be examined by a doctor. Growth is the primary indicator of health in a child...[but] medicine can [quickly] move from curing disease, to treating disability, to leveling disadvantage, to satisfying desires for perfection" (p. ix). Through the stories of the children, who are now adults, readers learn of the lasting physical, psychological, and emotional impact of this medical application on their lives. Normal at any Cost is an eye-opening, thought-provoking book that provides a revealing look at the issue of height control. Meanwhile, it encourages deep consideration of the ethical issues involved. These issues are numerous and far-reaching and will become more important as medical science finds other means of manipulating our genes. Interesting and easy to follow, this book reads like a novel: One can only wish that it were." librtea,March 29, 2009-- from Amazon.com

"A fascinating history of the medical community's manipulation of height and its effects, Normal at Any Cost asks its readers to consider the line where the extremes on the spectrum of what is normal cross over to pathology. As interesting as the individual case studies were, the overall theme of "normalcy" and its subjectivity and changeability over the years holds the book together and challenges the reader's own beliefs."
sashzj | Mar 31, 2009 | -- from librarything.com

"This book is a fascinating read. It leads the reader through the history of manipulating the height of young children. Cohen and Cosgrove write a book that is incredibly readible. I find most scientific books to be slightly boring, however these ladies manage to make an otherwise boring subject matter seem fascinating. I will definitely err on the side of caution when giving my children any medication which promises cosmetic results in the future as a result of these women's reporting." ejd0626 | May 29, 2009 |-- librarything.com

"Outstanding Research and Riveting Read: This is an outstanding book which compels us to think about the appropriateness and unintended consequences of medical solutions. The thoroughness with which the authors researched the subject is impressive, and the ease with which the reader is drawn into medically sophisticated issues is a tribute to their abilities to translate terms and procedures into readily understandable concepts. The authors interweave reporting with the stories of those who were treated, about whom the reader soon cares profoundly; I was sufficiently riveted that I sometimes skipped ahead to learn how these lives progressed. The book raises important bioethical issues without being dogmatic, and presents impartial retrospective and current views on the decisions that were made. I took a day off work to finish the book, and strongly recommend it." Barbara, May 17 -- Amazon.com

"...I found this book so, so interesting…all in all it’s an eye-opener." Citizenreader.com

"Medical books are bursting at the booksellers’ seams. Keith Black, a brilliant neurosurgeon, writes about his life, an inspiration from early childhood...Cohen and Cosgrove warn about the dangers of manipulating children’s height. If you want to inspire the young, have them read Black’s book. If you want them to be satisfied with who they are and what they look like, have them read Cohen and Cosgrove, which should be on everyone’s reading list."-- The Writing Doctor's Blog

"...I thought back to my school days and, probably like everyone else of my generation, we knew that some of the kids were exceptionally tall and others were short for their age. Only we didn’t think it was unusual or that that they should be pumped full of hormones and other medications. This is an important book for anyone concerned at the prospect for their own children or for children in general." -- Bookviews,Alan Caruba, a May 2009 Pick of the Month.