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| View Larger Image | Monkeys in the Middle: How One Drug Company Kept a Parkinsons Disease Breakthrough Out of Reach
by Nick Nelson
| | List Price: | $15.99 |  | | Available: | Usually ships in 24 hours | | | | | Sales Rank: | 151933 | | Studio: | BookSurge Publishing | | | Binding: | Paperback | | Number Of Pages: | 272 | | Publication Date: | May 27, 2008 | | Publisher: | BookSurge Publishing |
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EDITORIAL REVIEWS |
Product Description
Some said it was a miracle drug; others called it the cure. A drug known simply as "GDNF" seemed to do the impossible by actually reversing the effects of Parkinson's disease. The miracle ended in the fall of 2004 when Amgen Inc. abruptly halted clinical trials of GDNF and denied access to the drug. In "Monkeys in the Middle", investigative reporter Nick Nelson recounts the true story of the brave patients who took on the world's biggest biotechnology company for the right to be kept alive. |
CUSTOMER REVIEWS (Average Customer Rating: 5.0 based on 4 reviews)
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Monkeys in the Middle 
This is a book that deserves a wide reading audience. It is exceptionally well-written and helps the reader understand why medical breakthroughs for diseases such as Parkinson's Disease often do not reach the patients.
July 27, 2008 | |
Shocking
Nelson's book, Monkeys in the Middle, offers compelling, heart wrenching insight into how a drug company can rip hope away from so many who suffer from Parkinson's Disease. Working as a physical therapist, I have seen the damage and agony that this disease brings to patients and their families, and it is disgusting to think that a profit could be more important than a cure. Nelson gives readers a first-hand account of the struggle in the daily lives of Parkinson's victims, and how just when many of these victims found promise in a miracle drug, it was put back on the shelves until something more lucrative for the company could be discovered. This book makes you wonder what other discoveries could be on the horizon that drug companies are withholding. I highly recommend this book.
July 21, 2008 | |
Monkeys in the Middle by Nick Nelson
My name is Maggie Kaufman. My husband is one of the Phase II trial participants in Nick Nelsons book, "Monkeys in the Middle." Nick spent a week in our home doing interviews with us as well as visiting with Martha Bohn with my husband Steve. This was quite an intense past couple of years for Steve and I. We developed a network of Parkinsons patients and found GDNF supporters all across the country and the world. We know or have talked to most of the patients in both the Phase I and Phase II trial and consider all of them our very close friends. Nick has captured each and every patients story with precision. This book is well written and very factual. Nick wrote this book responsibly taking no sides. As you read the stories of each patient and the stories of the investigators, I believe the truth comes out. The fact is, GDNF works. Just before they removed the drug from Steve's pumps, I actually forgot he was sick. He always forgot to take his regular PD medications and would do just fine. Prior to GDNF he would sit on the couch and shake very rigidly all night long barely getting any sleep at night. 9 months after having GDNF in his system he was walking on the beams while building our deck without any assistance whatsoever. If this isn't a testimonial I don't know what is. A Parkinsons patient cannot fake balancing on a beam! This proves there was no placebo affect.
When reading about the antibodies or the lesions on the Monkeys brains you need to pay special attention to the opinions of the trial investigators in this book. I am not a scientific person but I believe
with the evidence of migrating catheters (catheters becoming dislodged from the pumps sending the drug into the patients abodomen rather than the brain) causing antibodies (good or bad, no one knows) and the fact that immediate withdrawal of the drug caused lesions (just as when a doctor puts you on steriods and you start with a higher dosage down to the lowest level to be "weaned" off the drug), abrupt withdrawal of GDNF caused lesions in Monkeys brains at very high dosage levels. It just amazes us that Amgen turned a blind eye to this. But the reality of it was stated very clearly by Roger Perlmutter at Amgen. It was simply put that Amgen could not make any money on this drug. The cost of the surgery is too great and the hospitals do not have enough surgeons to do these surgeries. They'd rather do back surgeries turning patients more quickly thus making more money. In essence, it would be a hard sell to the hospitals to take on such a costly time consuming surgery. This is a sad state our country is in. Greed takes over in the end. We haven't stopped fighting, we never will. We now can only hope that Amgen wakes up and finally puts the patient first rather than lining their own pocketbooks.
I personally would like everyone to know that you can make a difference in this world. It only took a few emails and a few more phone calls to get the attention of the world. If you find something you strongly believe in, it may seem like a daunting task but you can make a difference. You just need to find the right ear to listen to you. It's really not that hard.
Nick does a very good job of showing how the patients and their caregivers have banded together to get the attention of the world. We will continue this fight and ask for your prayers of support to get GDNF back for our loved ones and I believe, to once and for all cure Parkinsons Disease.
Buy this book. It's worth reading to hear the true, heartbreaking stories of each patient. This is reality bookreading. This is our life.
June 25, 2008 | |
Monkeys in the Middle
Near the beginning of "Moneys in the Middle" readers learn that when Jonas Salk invented polio vaccine in the 1950's, he was asked who would own the patent. He replied "Well the people I would say. There is no patent. Could you patent the sun?" How things have changed since those days!
"Monkeys in the Middle" is an investigative report about how one of the one of the most promising treatments for Parkinson's Disease in 40 years ended up sitting on the shelf of its sponsor, the giant biotech corporation Amgen. The company owns the patent to recombinant GDNF but is unwilling to complete the work required to bring it to market, or to license another company to do so. The focus of this book is on the real-life stories of the men and women who participated in the clinical trials of GDNF, which required them to undergo experimental brain surgery, in hopes that GDNF would alleviate their symptoms and restore their dying brain cells. As the author recounts, GDNF initially gave these patients their lives back, but Amgen then abruptly terminated further development of GDNF for market and prohibited further use of GDNF by the members of the clinical trial. The tragic results of that decision are detailed in the book.
The author interviewed trial participants, researchers, trial doctors, Amgen representatives and patient advocates to gather information for the book. He also reviewed published studies, news reports and legal proceedings. Important new facts about GDNF's effectiveness and safety are revealed that contradict Amgen's claims about why they halted the studies. Nelson strives to be objective, presenting all the various viewpoints and theories, allowing readers to come to their own conclusions.
The strongest chapters are those about the trial participants -- mostly in their own words - describing how they gradually improved and were joyfully able to live normal lives again. Surely this was proof that GDNF works - but in the strange world of the pharmaceutical industry and those, like the FDA, who regulate it, proof is not necessarily proof. Statistical and clinically observable improvements were dismissed by the company as mere "placebo" effects. Since their treatments were abruptly terminated in Sept. 2004, most of the participants gradually worsened again - becoming increasingly disabled.
Throughout the book, the readers learn what living with Parkinson's is really like; how it devastates lives and families, and why patients are so desperate for a cure. They come to understand why many in the Parkinson's patient community joined with the trial participants in their struggle to regain access to the drug. After the company denied requests for access based on "compassion" for the patients, lawsuits were filed by the clinical trial patients. The results of those suits are detailed.
According to "Monkeys in the Middle," if development had continued as originally planned, GDNF infusion delivery could have come to market in 2007. While other treatments are currently being tested, none was or is as close to clinical use as GDNF. Today, it still sits on the shelf, while the company and most of the researchers have "moved on." But the clinical trial participants you will meet in this book, and the patients like myself who support them, cannot just move on. As the disease progresses every day, a cure seems farther away.
Many Parkinson's patients believe that Amgen's handling of the GDNF trial and its termination is a case study of how not- to run a clinical trial. It did however, inspire advocates to create a Declaration of Clinical Research Rights and Responsibilities for People With Parkinson's, in hopes that the GDNF saga never happens again.
I highly recommend this book to anyone interested in medical research, health care issues, the pharma and biotech industry, bioethics, and neurologic diseases.
June 09, 2008 | |
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