OPINION: Paralyzed by Funding

by Chaz Southard

Massachusetts Gov. Mitt Romney is considering signing a bill that will now help fund spinal cord injury [SCI] research. This bill will add a surcharge to revoked driver’s licenses and could potentially generate up to a million and a half dollars per year, half of which will go directly toward spinal trauma resea rch.

Why is this so important? Imagine you’re in a dream being chased, you’re terrified and frightened and something evil is trying to hurt you, it’s moving closer, but you can’t move. Your legs, arms and fingers are frozen in cement and you are paralyzed. This is a common nightmare, but one that is a reality for approximately 500,000 families. If you include all forms of paralysis, stroke, ALS, Parkinson’s Disease, MS and many others, millions are affected.

Before the high profile injury and partial recovery of actor Christopher Reeve [who passed away this October], the majority of those who suffered spinal paralysis were considered to be permanently disabled. Patients were told to accept their condition; there would be no chance of recovery. No hope. Think about those who have suffered a neck injury, those who are dependent on a ventilator for oxygen. They are reminded of their prison with every breath they take, 28,000 times in 24 hours. Tell this person there is no hope, no chance for a cure and you would be telling them a lie.

In the summer of 2004, a cure for spinal cord injury has never been closer to becoming a reality. Human clinical trials are being conducted internationally with positive findings. Different combinations of stem cell transplant surgeries, performed by pioneering surgeons on brave patients, are convincing scientists worldwide that a path to a cure exists. It is not the lack of desire on the part of the scientific community to surge ahead with m o re human clinical trials but lack of funding.

Dr. Wise Young, chairman of the Department of Cell Biology and Neurosciences at Rutgers University, has been working in spinal cord injury research for more than 25 years. He has been championing the search for a cure and fighting for funding. He knows full well that the cure is here but only through human clinical trials can the very best surgery and therapies be developed. This takes money.

Dr. Young oversees and communicates daily with the spinal cord injured community thro u g h the Web site www.sciwire.com. Go to the cure section of this site and feel the excitement and hope that spills from the pages. Read the post surgery accounts of American patients who have had to travel to China for surgery by United States-trained Dr. Huang. Read about a young male quadriplegic who is just starting to wiggle his fingers or the middle-aged man who is now seeing his left leg move for the first time in 26 years, and are both finding hope in their lives. Recently two brave American girls traveled to Portugal to have cells from the lining of their noses transplanted into their spinal cord. These young women just testified before a US Senate hearing about their successful surgeries. Both of these women were told they would never walk again and both are walking with braces on their legs. A miracle? No, the future of the marvels of science using stem cell therapies.

Concurrently, scientists in the United States are struggling to find the best combination of therapies and cell transplants through their clinical trials in animals. University research centers all over the country are closing in on a cure for spinal paralysis. American scientists know that the cure exists but are frustrated by the lack of funding that slows their research to a crawl. In 2003, several laboratories reported that combination therapies can stimulate massive regeneration in the spinal cord, but are still struggling to further their studies. A federally funded clinical study network needs to be established.

Where is America on this issue? Once the center of scientific discovery, it is now losing its pre-eminence to countries like Portugal, China, Great Britain, Israel, Australia and Sweden. For the past four years President Bush added many roadblocks towards the cure for spinal cord injury as well as a myriad of other serious illnesses. The Republican-controlled Congress refuses to pass The Christopher Reeve Paralysis Act (CRPA), a nonpartisan piece of legislation that would have provided a modest $300 million over three years to establish a national network for clinical trials. Even privately funded foundations, such as the Christopher Reeve Paralysis Foundation, can only fund $10 million per year. So much more is needed.

For those afflicted with spinal cord injuries, pain, suffering and psychological trauma will continue until the scientists have the financial resources and freedoms they need to find the right combination of therapies and cell transplants. A spinal could injury can happen to anyone, anytime, anywhere. I know this better than most because I suffered a severe spinal trauma two years ago while diving into ocean waves. I have sought out the best rehabilitation facilities and have spoken with some of the most prominent people in the field. It is common knowledge in the spinal co rd community that a cure is not an “if” but a “when” and in my mind that “when” is now.

Like a fleeting nightmare, paralysis is not fatal, but can be far worse than death. It can imprison you for the rest of your life. Please join us as we appeal—with everyday citizens, congressmen, and philanthropists—to help paralyzed America stand. I hope to one day walk down to my local convenience store, pick up the newspaper and read “Thousands leave wheelchairs behind, and now walk amongst us. A modern miracle!” This one day could be in the next year or two, but only if we all let our voices be heard.

Chaz Southard lives in Topsfield and can be reached via his Web site at www.chazsouthard.org. This editorial is reprinted with the permission of the Tri – Town Transcript of Beverly, Massachusetts, a subsidiary of the Boston Herald.