About two weeks after my accident and spinal cord injury 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, the biggest shock of all was 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 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.
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. 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. 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.
And you are telling me that big business sees no monetary gain from SCI?
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 it does not have to be this way.
But what will it take? I will tell you…
- We have to come together. We need ONE unified vision.
- TOTAL access to the most up-to-date research and their results is what we need.
- We need to have a VOICE on what research gets funding and which promising treatments should be advanced. In fact, 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?
- 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 commercialization and approval of promising new therapies.
- 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.
- 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?