Is There a Conspiracy to Stop the Cure?
by Wise Young PhD MD, W. M. Keck Center for Collaborative Neuroscience
Rutgers University, 604 Allison Road, Piscataway, NJ 08854-8082
posted 24 January 2009, last updated 25 January 2009
I was recently asked the following question on carecure:
Originally Posted by JWJR1970
Hello again Dr. I was wanting to ask you another question…it’s something that I’ve heard through the grapevine over the years since I’ve been injured. Hopefully you can debunk it. I’ve always heard that it’s taken this long for a cure and that “they” meaning all the pharmacuetical companies, medical equipment companies etc really don’t want a cure because there’s more money to be made if there’s not a cure. Is there any truth at all to that? Gosh I surely hope not. Well thanks again for your time! Take care! Jack
I had answered this question as follows:
The conspiracy theory that pharmaceutical companies are making so much money from spinal cord injury that they are obstructing or hiding the cure is wrong for the following reasons:
1. A cure for spinal cord injury would make them far more money than selling bandages, generic drugs such as baclofen.
2. Spinal cord injury doesn’t make any company all that much money. All the treatments for spinal cord injury are used in many conditions.
3. Many companies would love to have a cure for spinal cord injury. The problem is that they are not convinced that a cure is possible or worth the billion dollar investment they would have to make.
After thinking about the answer some more, I thought that I would expand the answer to try to put the question away once and for all. In the mid-1990’s, the internet web sites were rife with rumors that pharmaceutical companies were conspiring together to prevent the cure. In fact, some people claim that the cure had already been discovered but the companies were hiding them so that it would not take away profits that they are making from people with spinal cord injury. Like all such conspiracy theories, this comes from several false assumptions based on half-truths.
It is true that people with spinal cord injury use a lot of supplies and drugs, which some companies are profiting from. The average person with spinal cord injury probably spends $22,000 per year on drugs, supplies (catheters and other items), and durable equipment (wheelchairs, FES, and other equipment). Multiplied by 250,000, the estimated number of people that are severely disabled by spinal cord injury, this gives $5.5 billion. While not insubstantial, this market is spread out over many companies, none of whom make so much from spinal cord injury that they might be motivated to stop a curative therapy from occurring.
It is true that few companies are investing in developing curative therapies for spinal cord injury. However, companies are refraining from such investments not because they are afraid that such therapies would steal profit from their other products but because they do not believe that they can make a profit from such products. Many companies believe that the spinal cord injury market is too small, that curative therapies for spinal cord will take too long and will cost too much to develop. If the potential market is 250,000 people, a 10% penetration into that market with $10,000 profit per person would add to only $250 million. This is not enough to warrant the average $1 billion cost of moving a therapy from discovery to market.
It is true that some wheelchair corporations will lose some business if many people with spinal cord injury no longer required wheelchairs. However, spinal cord injured people represent only a fraction of the wheelchair users, which includes people with multiple sclerosis, spina bifida, cerebral palsy, muscular dystrophy, stroke, amyotrophic lateral sclerosis, back pain, and many other problems. There is an estimated 1.6 million full-time wheelchair users in the United States , of which probably less than 15% have spinal cord injury. So, the sudden loss of even all spinal cord injuries from the wheelchair market would be significant but not devastating for the industry.
It is true that some companies are having trouble getting spinal cord injury therapies into clinical trial. For example, Geron  recently announced that they have received FDA approval for a phase 1 trial of oligodendroglial cell transplant to treat subacute spinal cord injury. According to news reports, the company has spent four years and $45 million to get this therapy into clinical trial. However, this is because it is the first human embryonic stem cell trial and it has been subject to extra scrutiny and criticism with consequent bureacratic and other delays.
It is true that Congress did not pass the Christopher and Dana Reeve Paralysis Act (CDRPA) to fund research to reverse paralysis. The bill was obstructed for over four years in Congress despite the support of several prominent Republican legislators (such as Arlen Spector and Orin Hatch) who strongly supported both the stem cell and spinal cord injury research. However, the CDRPA was blocked and prevented from coming to a vote. Was there a conspiracy in Congress to stop spinal cord injury cure research? I don’t think so. I think that it was just plain old politics.
In short, I do not believe that there is a conspiracy to stop the cure for spinal cord injury. We were simply unlucky in the last 8 years. The attack on 9/11/01 diverted the America’s resources and attention. Then we were hit by the worst finanical crisis since World War II. We were victims of stem cell politics, first by George W. Bush when he decided to restrict federal funding of stem cell rsearch, then by a Republican Congress who refused to allow the bill to come to a vote, and then two vetoes by George W. Bush. Even the Christopher and Dana Reeve Paralysis Act became a political football that could not be passed until after Bush stepped down from office.
As Christopher Reeve once pointed out, he wouldn’t mind so much if scientists had told him that the cure was a scientifically intractable problem and that it would take many years to come up with a cure. What upset him was that scientists told him that it was doable but the problems were lack money and politics. Those were the last two obstacles he expected to slow down the cure for spinal cord injury. Money and politics are things that we can do something about. Unfortunately, we have just lost 8 years and we must move quickly to make up for the lost time.