The following article was originally posted in April 2011, but is still relevant today. Those who were disappointed by this week's Senate failure to ratify the Convention on the Rights of People with Disabilities know that it is possible for many of our other important programs to be set aside in this time of political posturing. Funding for stem cell research, and even the access to stem cells, has been a matter of concern for the past several years. We should all be willing to remind Congress and the National Institutes of Health how important this research priority is whenever the opportunity to do so becomes available.
Following is the original post:
Revelations can appear at surprising times, and in unexpected places. I'm sure that Newton's theory of gravitational pull seemed so simple at the time that he discovered it that perhaps he wondered why he hadn't thought of it before. A similar thing happened to me last week, and it brought into focus the reality of the world we live in today.
Like about a hundred of my peers, our family members and the professionals who serve us in the spinal cord injury community, I was attending the sixth in a series of Reeve Foundation “road shows” in Seattle. The purpose was to discuss the advances in research that might eventually lead to improvements in quality of life for many of us, and especially for those who might be injured in the future. We heard from key Reeve staff about what has been happening, especially when it comes to the trends in funded research.
Complex graphs and charts illustrated the discussion items, and one of the more interesting charts discussed the pattern of funding for research. While we were pleased to learn that the Foundation has been a key player in supporting about $90 million worth of research during the past few years, that was contrasted with over $3 billion in funding that has been dedicated to HIV/AIDS research and eradication worldwide in a far shorter period of time. That comparison spurred conversations and questions about the reasons behind such a discrepancy in funding.
Why does HIV/AIDS gets such a strong level of support while researchers have struggled to get access to viable stem cells for spinal cord regeneration research which would likely benefit people with multiple types of disabilities including Parkinson's disease, perhaps Alzheimer's, and who knows what other neurological problems? To put this into perspective, I had a revelation that the answer is fairly simple. HIV/AIDS mushroomed into a worldwide epidemic in a very short period of time, and continues to kill millions of people who do not have access to advanced medical treatment because they live in developing countries. At one time HIV/AIDS was literally a death penalty.
In contrast, becoming spinal cord injured or having a disease that affects the spinal cord does not automatically become a death sentence. Maybe the reason that huge amounts of funding are not available for spinal cord injury research boils down to the fact that most of us live, rather than die, as a result of our conditions. At one time that was not the case. Before the introduction of sulfa drugs, large numbers of individuals with spinal cord injuries succumbed to secondary infections originating in urinary tracts, or from pneumonia. Shortened lifespans were part of the deal when it came to SCI.
As someone who was injured as an adult, one of my first requests was to meet an older person who had survived with spinal cord injuries. I had heard people express concerns about a shortened lifespan for quadriplegics, and needed assurance that I could avoid that fate. Fortunately someone gave me a copy of Spinal Network Extra, which was the precursor to the New Mobility magazine of today. That issue contained the story of a man who was injured as a child and cared for by his family on their rural farm. As I recall it, he was in his 80s when the story was written.
With that encouragement I vowed to remain as healthy as possible, and in the past 24 years I have been lucky to avoid major complications of a life-threatening nature. I now have many friends with SCI who are older than me and have been injured for over six decades.
I would like to think that Congress and the National Institutes of Health (NIH) can recognize the urgent need for funding to fuel the researchers who struggle to better understand the effects of damage to spinal cords and how those effects might be reversed. Would there be much larger amounts of funding available if there was a higher mortality rate connected to a spinal cord injury? It is sad to think that such comparisons might enter into the decision-making process, but in this era of dwindling resources the battle for that funding is far from over.
Today’s improved odds of living a normal lifespan with a spinal cord injury provide us with an advantage over those who had similar injuries in past generations. It means that we can still rally our collective voices to let our nation's leaders know the importance of continuing research funding even in this time of competing budget priorities.
© 2011 Michael Collins
