Public Comment

The recent spinal cord injury to Kevin Everett, a special teams player for the Buffalo Bills of the National Football League, highlights the frustrations felt by thousands of families across the United States. Everett’s prognosis continues to improve due to extraordinary emergency care delivered immediately after his accident. And, though he does not know it yet, his fan base grew considerably at the moment he was stilled upon colliding with his opponent. Large portions of the spinal injured community now follow his recovery. Their discontent stems from the reminders of neglect shown to the legacy of another high profile injured individual. 

The Christopher and Dana Reeve Paralysis Act will be five years old on Sept. 25. Unfortunately, no one is celebrating because it is five years still in the making and not five years providing vital programs enhancing treatments and cures. I know. My family lives the life. When my son broke his neck in 2002, the CDRPA was a buoy to which we attached ourselves in the roiled sea of a spinal injury. We reasoned that only a commitment on a national scale could make a difference in his lifetime.  

The bill enjoyed near unanimous support in both Houses, with numerous co-sponsors from each side of the aisle. Yet it languished in the 108th and 109th Republican controlled Congresses.  

First introduced on Reeve’s 50th birthday in 2002, the CDRPA provides for collaboration in paralysis research, rehabilitation, and quality of life programs through the National Institutes of Health. This trio of fundamentals unites the disparate elements of care and cure for spinal cord injury in particular, and paralysis in general. 

Reeve’s injury in 1995 and the final nine years of his life encapsulate an era of unprecedented hope for those with spinal injuries. In his search for remedies Reeve was at first revered and later ridiculed. Critics accused him of exploiting his fame to promote pie-in-the-sky therapies. The religious right castigated him for aggressively touting the unproven potential of stem cells.  

Unbowed, Reeve pursued a multi-layered advocacy for solutions to his plight and that of all living with paralysis. Ultimately, he mobilized a political caucus resulting in the drafting of the CDRPA. 

The bill made no mention of nor had any intention of changing the President’s policy on stem cells. Nonetheless, right-wing interest groups exerted their bias. Reeve dared to sail on the periphery of their prejudices and his legislation paid the price. Twice, in 2004 and 2006, Senators placed anonymous holds within committee, scuttling certain passage of the CDRPA. 

As injuries go, Reeve’s was as bad as they come. Nonetheless, with dedication to a physical regimen recommended by innovative doctors, the late actor exhibited neurological return. Even if this return was modest to most lay people, it was a revelation to researchers: here was evidence that a spinal cord could recover and perhaps even regenerate after trauma. 

Suddenly, an entire industry of intensive rehabilitation arose as exercise physiologists and physical therapists developed novel methods of treating paralysis. Methods, I might add, that will benefit Kevin Everett in his recovery. 

For scientists, the implication was clear; patients with damaged spinal cords could improve. And, as this plasticity presented itself convincingly in anecdotal settings, clinicians imagined possibilities if the rigor of trials were combined with the restorative therapies of regenerative medicine. Thus, the four-letter word, cure, crept into the lexicon of neuroscience. 

Reeve’s untimely death in 2004 dampened the enthusiasm. Hope diminished further, 1 1/2 years later, with the passing of his wife Dana. Today, the remnants of momentum for therapies stagger more sideways than forward. The Christopher and Dana Reeve Foundation continues to be a guiding light. Its effectiveness, however, dims due to myopic funding priorities and the lack of a charismatic leader. 

Certainly, Reeve changed the debate about recovery from spinal cord injury. His savvy gave a voice to disabled America. But the volume of that unifying voice softens with each fleeting year. The paralyzed sub-culture of our society, which includes my family, seethes when reminded of the opportunities delayed by regressive reactions to the Reeve bill. 

If enacted, this legislation will not reverse paralysis. But it may well be the bridge between hope and future deliverance. The CDRPA initiates a structured funding platform and coordinates a clinical trial network to test the theories of researchers investigating the riddles of paralysis. 

The passage of the CDRPA would also signal our country is ready to confront the moral absolutism stifling much of the legislative process. By denying solutions to all with the remotest of associations to their prejudices, the religious right, in this instance, withheld hope from those living with crippling maladies. 

On the anniversary of the birth of this bill, no one should question whether its namesake was a conservative or a liberal. The relevant question is whether humane healthcare policy can advance without pandering to the ideology of faith-based opinion. If so, that would be something worth celebrating and I believe Kevin Everett and his family will be cheering. 

John Smith is the father of a Jack Kent Cooke Scholar and first-year student at Berkeley’s Boalt School of Law. He volunteers for Care Cure Community, the world’s largest website devoted to spinal cord injury, which is hosted by Rutgers University, where Smith moderates forums on cure, funding, legislation and advocacy.