A Broken Cord: Part 2

About two weeks after my accident I was lying in the Intensive Care Unit of what is now Shands Medical Center in Jacksonville, FL when the hospital-appointed Psychiatrist walked into my room. I knew immediately she needed more therapy than I did. With a feigned look of interest she glanced over my wall that had been covered with posters of my favorite surfers in various locations around the world and said to me, "Well, we may not get you up on a board again, but we can get you down to the beach. What do you think of that?" I looked her square in the eye and said, "It's not your responsibility to see to it that I get up on that board, but you will see it happen." She left the room and never came back.

Over the years I would encounter this kind of misinformed, patronizing, arrogant hubris from every sector of the American medical establishment. From doctors to therapists to medical equipment suppliers to case workers, time and time again I have been forced to endure some absurd, discouraging statement about "the way things are" in the spinal cord world and how "there's just no getting around it". Even when there is overwhelming evidence to suggest otherwise. However, nothing prepared me for the defeatist drivel I've heard from my fellow SCI survivors in chairs. While many are bravely challenging the limits of their own bodies and accomplishing incredible things, there is a prevailing sentiment that if a doctor says it is so than it must be so. Too many of us nod our heads in assent to whatever en vogue excuse comes down the pike. However, the biggest shock of all, and the motivation behind this series is the prevailing doctrine espoused and accepted by the industry which states that because there are so few spinal cord injuries it does not warrant serious monetary investment to find a cure or back a promising treatment.So when there finally is hope of a break through from the research labs of the scientists, so highly dedicated to finding a cure, it is quickly stuck down or rejected by the powers of industry and money because they feel the SCI market will not yield sufficient returns on their investment. So we just shake our heads sadly and agree as another year goes by and with 30 new spinal cord injuries a day. There seems to be a serious flaw in the system. That is equivalent to $3 Million more in medical insurance expenditure than yesterday and it's not counting initial hospital costs. I racked up $250,000 alone in the first week of my injury and that was in 1994!

So do the math in your head. If there are 365 days in a year at a rate of 30 new injuries per day... that's 10,950 new injuries per year. Plug in the annual estimated living cost of $100,000 per year and yes, you guessed it, $1,095,000,000 in new insurance payouts per year. But there's no money in Spinal Cord Injury.

Yeah... right.

As a community those of us with a spinal cord injury need to get brutally honest with ourselves and admit two very important facts. 1. The medical establishment in this country and ultimately globally is a business, plain and simple, and 2. The big money to be made is in the form of dependent, long-term care, whether it is pain medication, antidepressants, wheelchairs, incontinence products, bandages, nursing care or your daddy's Viagra, keeping you sick is the healthiest thing they can do for business.

After my posting last week I did some more research. If you have suffered a spinal cord injury invariably you need a wheelchair to get around, not everyone, but most do. The two largest companies who manufacture wheelchairs are Invacare and Quickie. Both companies also own several subsidiaries which make cushions, seating systems and much more. Now granted, I am not stupid. I know their entire client base is not spinal cord injury, but both companies together average over $5 Billion in annual revenue. The secondary conditions of spinal cord injury are serious moneymakers. Most SCI survivors take a daily cocktail of pain killers, spasm reducers, anti-depressants, diuretics, bone loss preventatives and much more. Coloplast, the European urinary incontinence product giant posted $10 Billion in annual revenue last year.

And you are telling me that big business sees no monetary gain from SCI?

Now, with all of this in mind, I have been pretty direct up to now, but brace yourself for what I am about to say next. If you believe that these so-called "charity organizations" that raise money for research related to spinal cord injury are apolitical and have your best interests at heart, well... you're being naive. We don't need more money to take people in chairs surfing. When you get out of the water you'll be just as paralyzed as you were when you went in.We don’t need more feel good programs or patient guides to living with a SCI. We don’t need gala events for fundraising that cost more money to put on then what is raised to fund more research. What we do need is for these charitable organizations to focus and get something finished before starting another round of new research. If the spinal cord community is going to ever be a community we need to acknowledge that we have been reduced to a dark corner of the world of medical research, forced to grovel for the financial crumbs so desperately needed to fund a real, tangible treatment, with no-one but ourselves to blame.

Am I claiming that these groups who work so hard are corrupt and ill-intended? No! A million times no! Am I saying the work is for naught? Again, no! Am I saying that money and business is evil? Not in the least. Prosperity is a gift, a tool by which a man can better himself and his world if he has the heart to do so. What I am saying is that in today's world of medicine the science of curing suffering has lost its Divine mandate to be its brother's keeper and use every means at its disposal to cure what ails us. Big business and greed, fear of shortage, fear of failure and above all an acceptance of the way things are has created a trickle-down effect that has turned into a river of bullshit that runs from the companies who control modern medicine to the FDA to the biotech Venture Capitalists to the insurance companies to the researchers and doctors to charities until finally it reaches you and I. I'm telling you dear reader, it does not have to be this way.

But what will it take? I will tell you...

1. We have to come together. We need ONE unified vision.

2. We need to have TOTAL access to the most up-to-date research and their results.

3. We need to have a VOICE on what research gets funding and which promising treatments should be advanced. We need to have a realistic timeline for results and focus on the single, most effective treatment we have to date, then back it with the full financial force of all our resources. Finally get the product to us, the end user. After all what good is all the money spent on research if you don’t spend the last amount to get it out of the lab, into production and over the finish line to those who need it most?

4. We need to notify our insurance carriers, including Medicaid and Medicare when there is a low-cost, effective treatment for SCI and demand that they put pressure on the relevant major companies who are making a profit from SCI to directly fund the next steps beyond the research, that being the commercialization and approval of promising new therapies.

5. Encourage private research and biotech start-ups from within our own ranks that are fast, goal-oriented and ready to get real working product out to us, the end user, in a timely manner.

6. Discourage the prestige-seeking and self-serving College and University-based research monolith that has blocked true progress for decades. Yes, they serve a great purpose, but it's high time they SERVE it instead of dictate it.

7. Charity organizations need to reform their policies so that private companies can apply for grants equally or receive a loan or even investment.

8. Never accept "No" as an answer again.

I believe it's possible. Can you see it? What kind of precedent would it set in the industry? What if we beat the industry at its own game? We have to show the world how bad we want to walk.

So what is it going to take? Before I leave you today ponder this a moment. What if there was just such a technology? Something here, now. What would you do to get your hands on it?

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