on March 16, 2012
The Forever Fix is one of the most moving books I have had the pleasure to read. This might come as s surprise given the high technical nature of the subject matter. The story of gene therapy is not just a historical recitation of the efforts of dedicated scientists who have advanced research, embedded in this story are the individual stories of the families and their brave children who battle the effects of their disorders every day.
As Max's mom (featured in her book), I am grateful for the opportunity to share our story and bring to light both the daily challenges of raising a child with a rare genetic disorder as well as our journey in seeking a medical therapy to help my precious son.
Without these brave families and their children, none of the advances in gene therapy would be possible. I am forever grateful to Ricki Lewis for bringing attention to both the science and the lives these medical advancements have touched ~Ilyce Randell
on March 20, 2012
Lewis does an excellent job of unraveling the history of gene therapy layer by layer. Where others center around the success of science, Lewis masterfully interweaves the bitter reality of failure and the footmarks of success and helps her reader understand how failure was necessary to improve the science to ensure modern day's use of gene therapy was more successful.
If gene therapy incites thoughts of fear and thus reservation about whether it should be allowed, Lewis sides with her readers' reservations and takes them face to face with the failure of medicine throughout time and how it affected the patient, their family and the treating physicians. However, her brilliance emerges in how she doesn't make excuses for the failure, rather, she suggests it as a form of medical evolution to her readers. Why?
Because medicine is not a perfect science, Lewis might argue and she poignantly conveys that medical history is riddled with disastrous beginnings that eventually laid the groundwork for medical techniques that society now readily embraces as "routine."
But she never lets her reader forget that there are people who bravely died so that we can now benefit from routine procedures.
Many scientific techniques are quite abstract because they involve things that society cannot touch and often do not understand. Before the lay person has a chance to be turned off by the detailed science, Lewis masterfully puts an abstract treatment into the palms of her readers by educating them step by step about the science behind gene therapy.
"Touch its potential, hold its infancy and feel its power over life and death," Lewis seemingly pleads with her reader.
She readily empowers her readers by educating them about the techniques and then allows them to enter the research laboratory for the first time and walk in the shadows of scientists and physicians, unveiling them as the human beings that they are.
Hollywood likes to portray scientists as arrogant, calculated and often devoid of emotions. Yet Lewis takes the reader into the lives of the scientists. She helps her readers understand what drives a scientist and how this drive can yield a painstakingly, long course of failure, sacrifice, judgment and sometimes timely luck to achieve their goal.
As Lewis deftly conveys, it is because of their quest and aspiration to journey the unthinkable that today we are blessed with medical practices that are deemed, routine.
Lewis' mastery is evoked in her ability to piece together the historical moments that have shaped what we now know as gene therapy, because in many cases she was there as history unfolded. If rare diseases are a battlefield, Lewis has lived in the trenches - and her book unfolds masterfully like a documentary such as Band of Brothers.
Lewis is as bold as the patients, scientists and physicians she writes about. "Is the experiment meant to help the particular patient or to advance a therapy that one day could help many? Or Both?" Lewis candidly asks her reader to decide.
Her first hand experience takes her reader on the rollercoaster that patients and their families ride as they race against the clock in many instances to find a cure or treatment for a loved one. Time again she captures how empowering love is when evoked for a family member or loved-one.
At times you will be holding the hands of dismayed parents, faced with questions and situations that no one is ever prepared for.
And then you will find yourself wanting to hold the children whose health slowly degrades towards death with devastating diseases such as adrenoleukodystrophy (ALD) and giant axonal neuropathy (GAN) - whose only hope is the promise of gene therapy. For without it, the child's birth was a premature death sentence.
And then, after all the peaks, the valley and plateaus, Lewis unveils why people dare to dream and strive to turn their vision into reality.
on March 29, 2012
In "The Forever Fix", Dr. Ricki Lewis tells a terrific story. Years ago, at the dawn of genomics, bioinformatics and "personalized medicine", gene therapy was lauded as the next big thing. But serious problems occurred and clinical trials were effectively banned. More recently, gene therapy has picked up steam and several breakthroughs have been achieved. Dr. Lewis brings a deep knowledge of science and the scientific method, as well as the broad skill set of the experienced writer, to her description of how gene therapy restored a young boy's sight. This is a wonderful tale of human interest and a compelling overview of the field of gene therapy. Highly recommended for a general audience as well as researchers and physicians.
on July 23, 2012
I started out as just another pre-medical freshman at Duke University in 1988, but I soon discovered that there was a prevailing mentality ruling mainstream science that was anathema to me, so I failed to thrive and maintain interest in the health sciences, bouncing around from one field to another within the sciences over the years.
Most recently, after an aborted educational start in the field of natural medicine, I've come to the conclusion that -- aside from a much-needed nutritional revolution, the other half of what simply must happen in order to advance a TRUE health improvement revolution -- we simply must attack those intractable problems of human health for which dietary and nutritional changes simply would either not be reasonably sustainable, or at all sufficient.
Much to the enraged chagrin of the Rockefellerian petro-pharmaceutical mafia that has ruled human health since the very late 1800's, we must find a way to actually repair maladaptive genes themselves and finally break the shackles of undue drug dependency once and for all.
With all that said, I was delighted to find Ricki Lewis' book. She, perhaps alone, truly gets it. She truly understands that the nature of the problem is, as she so rightly puts it, "science for science's sake", rather than for the sake of the greater human race who sincerely needs what would otherwise be its civilizing fruits. Dr. Lewis has written a book that, to my knowledge, is singular of kind: it really gives a damn about the good, and shows us clearly and plainly how we may not only get there, but how we have already begun to get there -- to lasting and humane fixes rather than deliberately temporary and purely profiteering temporary band-aids.
on June 27, 2012
If, like me, you grew up believing that scientists can't write, here's the proof of how wrong one can be. This is a science book so skilfully constructed that it reads like a novel - except that it is a true story about an undeniably important subject, the promise of gene therapy.
Here is an author whose writing skill is such that she can take on a difficult subject and blend it with real-life, factual information so deftly that you're likely to forget you're reading a book about cutting-edge science. Words like adrenoleukodystrophy will not disturb you. Instead, you will very quickly realize that this is a book about vulnerable young people, their families and their carers. Importantly, it is also about the people on research teams and hospital staffs who believe that with time gene therapy can improve and save the lives of more youngsters in the future.
It is not necessarily a pretty story. Tragedy is built into the stories of the youngsters who did not respond to certain types of gene therapy and did not survive. Success comes in the stories of people like Corey Haas, the central character of this story, who underwent gene therapy for hereditary blindness, and his family. Corey's sight gradually returned, a success story that gave hope to the millions who suffer from "glitches' that prevent genes from doing their job. Science knows enough about genes these days that Corey's problem was traced to a gene that normally would use vitamin A to send visual signals to his brain. The challenge was to undo the genetic problem so that Corey's descent into blindness would cease and his sight would return. Incredibly it worked.
Author Ricki Lewis, a geneticist by training, explains with engaging clarity how this revolution is coming about. If you want to know the technical details of how the work is being undertaken, those details are there. If you want an enjoyable, heart-warming, and optimistic story about a family in trouble and how science helped them, it's there too. You can't miss. And incidentally, you might as well get acquainted with gene therapy now, because it's almost surely going to be one of the Big Stories of this scientific decade.
on September 21, 2012
The Forever Fix is a great read. Ricki Lewis delivers the history of gene therapy and tells the incredible story of Corey Haas in a way that is smart and engaging. The author makes the technical process easy to understand, even for those of us who are not scientists.
The Forever Fix delves into other stories of gene therapy--including the epic failure that was the Jesse Gelsinger case--and provides a comprehensive view of how far the technology has come in the past few decades. This would have been an ideal book to read in some of my undergrad biotech/ human genetics courses. Given the multiple distractions of the Text Messaging/ Facebook era that we live in today, Ricki's approach of jumping from story to explanation, from anecdote to story, is refreshing and keeps readers engaged.
I currently work in the biopharma industry and would also recommend this book to professionals looking to ramp up on gene therapy, as this is surely not the last we will hear of the groundbreaking technology.
on November 12, 2012
I enjoyed this book so much that it has prompted my first review on Amazon. Dr. Lewis describes the evolution of gene therapy over time as different ways to deliver working genes are experimented with to determine safety and effectiveness. To explain and humanize the complex science, she uses the compelling stories of patients and families with rare diseases and the researchers that support them.
Like many things I read about rare disease communities, this book made me cry, cheer, shake my head in sheer amazement at what these families have accomplished and, ultimately, left me inspired. I highly recommend reading this well-written book to get a glimpse into the dedicated scientists and pioneering families who are taking medicine to a whole new level.
on January 12, 2013
I don't remember how I came across this book, but I am glad I did. As a biology teacher, I'm always looking for books to recommend to my students, and this one does not disappoint. Ricki Lewis takes you through the good, bad and ugly history of gene therapy by telling the stories of the individuals who have been treated for various inherited diseases using this technology.
Lewis is a fantastic storyteller and teacher, making the very technical aspects of the biology involved easy to understand for laypeople. I plan on using parts of this book during the genetics unit that I teach later this semester, and assigning it as a book for my students to read next year.
Even if you're not a biology lover, this book will definitely pique your interest.
on April 21, 2014
As a disclaimer I should say that genetics is part of what I do at work, even though I don't work on gene therapy in particular. But aside from the topic, which I knew I would enjoy, I loved Dr. Lewis's writing and the way she effortlessly folded all the science (and the history of science) into the narrative. I am grateful to Dr. Lewis because through this wonderful book she humanized scientific research, giving a voice to the struggle of many patients and their families. She gave a voice and face to the doctors and the researchers who face many failures for every small step forward. Science is not dry and impersonal. Science is made of people, not just the scientists, but also the people who ultimately benefit from it, and the ones who, due to unfortunate events, didn't benefit but were still part of what made the successes possible. A wonderful read and a truly touching story.
on May 29, 2013
I have been trained as a scientist and found this book to be fascinating. I remember taking a course in bioethics and learning of its renewed importance in the age of gene therapy. Unfortunately, the author chooses to concentrate on one case which she identifies as being true gene therapy when in fact, it is a partial treatment and may only be successful in a very small subset of young patients. The explanations of the genetics involved and the biological mechanisms used are primarily a means of showing off the author's talents. Having written a textbook for undergraduate students, I am sure she is knowledgeable but this should not be read as a textbook, but as a biographical description of what can go wrong and what can go right when gene therapy is attempted. Nevertheless, it does hold the reader's attention and that is no small thing when explicating such a difficult subject.