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My wife and I are both wheelchair users with M.S. and a recent fact-based movie about stem cell research and A.L.S. started some renewed thoughts buzzing about possible cures. Strangely, the movie cited some research with M.S. early on, but after that brief snippet, no other mention was made of M.S.. There was merely an appeal at the end of the movie to support the search for a cure – for A.L.S., Parkinson’s, and Spinal Injuries. But what about M.S.?
And to add another log to our fire of cynicism, we recently had a very pleasant appointment with a leading neurologist whose knowledge and skill in the field are well known. But all we came away with was a recommendation for my wife to try Avonex – one of the touted Interferon drugs from a pharmaceutical giant who regularly sends out expensive ‘sales’ kits and puts on "M.S. Conferences" which are basically sales pitches. And now we get weekly calls trying to get us to try Avonex. It’s BIG business, selling a drug which while providing some relief – for some – is far from a cure and has a lot of side effects on some. What about any alternate options?
Where’s the motivation to find real cures? Stem cell research holds some real promise for millions with a variety of disabilities and conditions, and while technically supported by the M.S. Society and other disability organizations, it is a moral and political mine field to be too strongly supportive. And Christopher Reeves’ and Michael J. Fox’s efforts aside, where is the inducement for spinal cord and Parkinson’s research?
I am not a conspiracy fan like Oliver Stone – who has provided us with some good movies – but look at the ‘cost’ of cures. Rehab hospitals and nursing homes are dependent on insurance and litigation settlements. Converting vehicles for wheelchair driving is a strong business powered by vocational rehab money and insurance settlements. And for every disorder there a range of specific accessories. And of course, there is the need for periodic replacements of durable medical goods like the power and manual wheelchairs I use (I need both, and my wife needs a manual chair and a scooter for when we go out), and providing such equipment are as big a business as that of drug companies – especially given the inflated hardware costs that count on insurance reimbursements.
Maybe we’re being overly cynical, but after twenty-one years with M.S. (sixteen in a wheelchair), I’m tired of it, and I know my wife feels the same. We want to see stem cell research expedited and explored for all the conditions it could benefit. I realize there are ethical ramifications involved – just as there are in many research ventures – but with proper safeguards, the human life savings surely ought to exceed the loss of business. After all, it would be enabling a LARGE number of people to be more active and productive than otherwise possible.
And for whatever condition, I welcome feedback from anyone with solid and reputable information on any new or ongoing stem cell research that I can add to my web site http://www.netreach.net/~abrejcha in a new category I will be adding.
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