Spinal Confusion

...an attempt to clarify confusing and innacurate information in science articles

Friday, August 19, 2005

9 Year Anniversary

Today marks the ninth anniversary of the accident that left me paralyzed. Surprisingly it is not a depressing or sad day, not that my anniversaries ever are. Frustrating for sure, but otherwise a standard day.

However, one thing has been nagging me for the past two years or so: the song "14 Years" by Guns N' Roses will randomly pop into my head and it leaves me thinking "Will it really be fourteen years before I am 'fixed'?"

Today begins the five year countdown to my fourteen year mark, so I guess its time to create a five-year plan to be totally cured by then: August 19, 2010.

I hope to be functionally independent (i.e., having use of my arms, hands, wrists, and fingers) before that time, but I want it all by that date. How do we get from here to there?

Kids in the audience thinking embryonic stem cells, put your hands down.

First, we need to establish where "here" is. "Here" is the combination of the existing political and societal mindsets and the current base of scientific knowledge.

Let's start by breaking apart the political mindset as it currently exists. In one corner -- weighing in at 535 members -- we have Congress, who believe (by a simple majority) that embryonic stem cell research should be expanded. In the other corner, we have -- weighing in at one smirking Texan -- President Bush, who believes that his embryonic stem cell research policy from 2001 is as fine as a Texas steer.

What about society? Recent polls have consistently shown that the public is in favor of expanding the stem cell policy beyond the 22 currently available embryonic stem cell lines.

The science? It's available, and scientists are ready for an expanded policy. The science is not yet perfect, and that's one of the reasons scientists want it.

Conclusion? President Bush's veto wins out on expanding embryonic stem cell research by not having a sufficient number of votes to override his veto in the House of Representatives. StemPAC is hoping to take care of this little problem in the 2006 mid-term elections. Until then, the only shot federal funding of embryonic stem cell research has of being expanded is if ways are found to obtain embryonic stem cells without creating, harming, or destroying embryos.

So, embryonic stem cells are out until 2006. What else can we do?

Well, there are a few things.

The first is work to set up a network trained to run clinical trials designed to cure paralysis. Such a network would reduce costs for businesses attempting to run clinical trials, as startup costs associated with trials would be nearly eliminated. It would also remove the need to add (and fund) concurrent trials of competing therapies, as long as other trial criteria conform to an established standard.

Luckily, a bill exists to do just this: the Christopher Reeve Paralysis Act. Unfortunately, it has received little attention from the media and Congressmen know nothing about it. Contact them and let them know about this bill. An important item to note is to include that the bill has nothing to do with stem cells, which is a true but little known fact.

Second, ask your Congressmen to support H.R. 3144 and fund research into non-destructive methods of obtaining embryonic stem cells.

StemPAC may fail in their efforts in 2006, pushing expansion of embryonic stem cell research back to 2008 at the earliest. Failure sucks, but it happens. Be ready with a backup plan just in case. Embryonic stem cells obtained by alternative methods will need to display the same properties and abilities as existing embryonic stem cell lines. That will take time, and it's important to begin the process sooner rather than later.

Finally, urge your Congressmen to support significant increases in NIH funding. An initiative was launched in 1997 under President Clinton to double the NIH budget. That goal was accomplished in 2002, but President Bush has directly forced its budget to stagnate since then. This move alone has stalled research more than any other action Bush has done during his terms.

In review, the five year plan is pretty simple.

* Establish a clinical trial network
* Push for increased NIH funding
* Work to elect pro-ESC expansion House members
* Support funding for alternative methods of deriving embryonic stem cells
* Support cure research, even non-ESC cure research

* Enjoy the benefits of a clinical trial network
* Push for increased NIH funding
* Support funding to prove alternatively derived ESCs are comparable to "regular" ESCs
* Try to pass an ESC expansion bill

* One way or another, stem cells are here to stay
* Push for increased NIH funding
* Work your butt off after receiving the cure to maximize recovery

* Enjoy a life without paralysis :)

August 19, 2010. Let's join together and achieve a cure by this date. Let's not make anyone suffer "14 years of pain" or "14 years that are gone forever" ever again.
It's been
14 years of silence
It's been
14 years of pain
It's been
14 years that are gone forever
And I'll never have again

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At August 21, 2005 2:31 PM, Anonymous Chaz said...


I appreciate your realism and optimism. Your perspective is refreshing and goal oriented...thanks are making my day little brighter :)

At August 21, 2005 8:22 PM, Blogger Steven said...

Thanks Chaz. All we need to do now is implement the plan.

The CRPA can possible be passed in September. The 25th was Christopher Reeve's birthday, so we can push our legislators to have the bill on Bush's desk by that day.

BTW, your interview was good. Thanks for posting it. :)


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