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Thread: Christopher and Dana Reeve Paralysis Act

  1. #91
    Quote Originally Posted by betheny
    I like the way you think, Sue!
    Actually, one tofu-bratwurst eating not-to-be-named wild back in the 60's flower child suggested it first--I'm just thinking it's a great idea.

    Anyone you know John Smith?

  2. #92
    I just called his office to tell them what I think of their Senator. When I mentioned the CR bill I was promtply transfered to a voice mail system. When I called back my number has been blocked.
    I would say he might me getting some negative response on his position.
    Maybe we should keep trying to "lobby" him until he changes his mind.

  3. #93
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    Arrow National Call In Day To Senator Coburn

    Time to dust off the phones and vent some of that pent up anger and frustration in the right direction. (Boy, am I pissed)

    Senator Coburn is holding up not just a “bill” but a bill that represents an “emancipation proclamation”.

    A bill that says to the spinal cord community we recognize you and want to help you out of those chairs.

    This is not just some bill for a pet highway project or a bridge to nowhere, this is a bill about the hopes and dreams of real people struggling to stay healthy and to one day to heal and be set free of the confinements of paralysis.

    It is a bill that may one day relieve the heartache and pain that parents, families and friends feel for their injured loved ones.

    Holding this bill is mean spirited and I feel is has nothing to do with duplicate spending. Dr. Coburn should ask himself, “What would Jesus do?” Would Jesus look into wallet and say, “Come on man, I gave at the office!” I DON’T THINK SO! Did not Jesus “cure” a paralyzed man?
    So Dr. Coburn what WWJD?

    What is Senator Coburn’s true reason for holding this bill? If we could figure that out we have chance of having him release it….maybe. If, in some petty way, it is because it has Christopher and Dana Reeves’ names attached to it there is not much that we can do about that.

    If it is about the funding of research we certainly can make an argument about thAT, as research funding has been cut versus the long term costs of care and the significant savings that can be had with a cure.

    We need to send a strong unified message to the Senator that this bill needs to be released, a message that he will listen to. Also, a message that he can not spin out of.

    Thoughts on a refined message? And what day we should do this?

    And Sue, right on , sometimes you gotta do just what you gotta do.

  4. #94
    Senior Member Leo's Avatar
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    Quote Originally Posted by litespeed4
    I just called his office to tell them what I think of their Senator. When I mentioned the CR bill I was promtply transfered to a voice mail system. When I called back my number has been blocked.
    I would say he might me getting some negative response on his position.
    Maybe we should keep trying to "lobby" him until he changes his mind.
    One still has the right to vent so if his office won't listen maybe his Okie partner might.

    Inhofe, James M.- (R - OK) Class II
    453 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
    (202) 224-4721
    Web Form: http://inhofe.senate.gov/contactus.htm

    enter zip Beth provided
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  5. #95
    Quote Originally Posted by Susan M
    and here, at last, is our problem in the US Senate...

    “I’ve held up tons of bills that I’ve gotten bad press on,” Coburn said.

    One of those is the Christopher and Dana Reeve Paralysis Act, sponsored by Sen. Tom Harkin (D-Iowa), which would direct funding toward paralysis research. Coburn is holding it, arguing that such research is already being federally funded and decisions should be made by peer-reviewed medical authorities, not Congress."

    Full story here:

    http://coburn.senate.gov/public/inde...a-7c724b2adace
    My $.02

    The NIH is a government agency with ultimate oversight by congress and the laws and mandates passed by that governing body. Our elected officials are our voice in forming said mandates and laws--without that voice we have no say in the process. Therefore, it is not only the right of congress to tell the NIH how to function, it is their job-within reason, of course.

    We have certainly not approached this as a "poor us, we are in wheelchairs, feel sorry for us" situation. We have provided statistical evidence on cost/benefit, return on investment, and potential therapies in the pipeline. We have also clearly used the terminology "curative therapies" vs "cure" to reflect it is an incremental therapeutic process and no magic pill. As a result, it is obvious Sen. Coburn has not taken the time to review the details of this bill, just slapped a unilateral hold on any bill that appears to tell the NIH how to do its' job. Clearly not acceptable.
    Last edited by Susan M; 12-13-2007 at 02:39 PM.

  6. #96
    For what it's worth........
    Here is part of my message to him addressing the financial impact of SCI. It would be helpful if others would also include some form of this aspect in their letters.

    If you have somehow lost your way as a doctor and no longer posses the compassion to apply your talents to improving the quality of life for individuals suffering from debilitating conditions and diseases, consider other aspects of current research. As a legislator you should be concerned with American competitiveness as it relates to medical research. Researchers should not be moving overseas to conduct their research. Researchers within our borders should not be chasing grant money from state to state. Precious time and funds are lost setting up new labs and hiring staff when they do. With the cut in NIH funding, fewer medical students are entering the field of research. Grant money has become more competitive than ever. We are losing our competitive edge. This bill can help provide a framework which supports promising research and thereby, attracts a new generation of promising medical researchers.

    If you want to be fiscally responsible, you need to know that the estimated yearly cost for a SCI ranges from $741K to $219K during the first year. Each subsequent year, the expenses run from $133k to $15K depending upon the severity of the injury. Add to that between $16B -$26B annually in lost wages. Advancing daily function for individuals, will improve their chances of returning to work and reduce the costs associated with Medicare and Social Security payments. Again, this bill will promote collaboration and reduce research redundancies creating mechanisms to more efficiently spend current dollars. Fiscally, this is a very sound bill.

    Those are the numbers, the human toll is counted in loss of motor and sensory function, loss of bowel and bladder control, sexual dysfunction, skin breakdown, osteoporosis and fractures, pneumonia, atelectasis, aspiration, heterotopic ossification, spasticity, autonomic dysreflexia, deep vein thrombosis, cardiovascular disease, syringomyelia, neuropathic pain, respiratory dysfunction, urinary tract and kidney infections, temperature sensation, blood pressure, pressure ulcers to name a few. The group that visited Capitol Hill could have given a personal account on all of these conditions. But as a doctor, you probably already know this. Perhaps you choose to ignore it. I wish we had that option.

    The federal government has never passed a single piece of legislation addressing our nation's policy on supporting research, rehabilitation and quality of life for individuals with paralysis. This bill will provide a much needed framework to advance the science and make improvements in these areas. This bill provides hope to more than 400,000 people living in this country with spinal cord injury and it is estimated that there are 12,000 new cases each year. This includes more than 6,000 soldiers serving in Iraq and Afghanistan that have suffered brain and SCI. That number continues to climb. This bill provides an opportunity to support our troops.

    How can it be that after five years of explaining this bill to legislators and explaining the benefits, it comes down to one Senator, a doctor no less who holds our recovery hostage? Are you totally unaware of the research in repairing spinal cord injury these days? You need to read about Hans Keirstead, Stephen Davies, Wise Young, John Kessler, Ed Wirth and probably a dozen more I could mention that are the front lines of research in this field. They need our help. I need your help. My son needs your help.

    People are dying here Senator. What does it take to gain your support? The money appropriated to this bill is pennies compared to the overall budget. Don't hold this bill hostage in a power play for some political maneuvering. Think back to the days when you where a physician, do you remember wanting to help individuals improve their quality of life? You can do that again.

    This bill is the cornerstone of a plan to help people put their lives back together. Not just the individuals suffering from neuro conditions, but their family that cares for them as well. I would appreciate your support of this bill.
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  7. #97
    IMHopeful,
    Your message is extremely well written.
    Honest and flowing.
    Life isn't about getting thru the storm but learning to dance in the rain.

  8. #98

    My letter to the editor-OKC paper

    We'll see...It's pretty hard to get anything negative published. The only thing I've gotten published was an ode to Dana Reeve. Can only be 225 words.

    ****************************************

    I am a quadriplegic wife and mom, organizer of DC rallies for paralyzed folks. We aim to increase federal funding for paralysis research via the Christopher and Dana Reeve Paralysis Act, a bipartisan bill funding only federally approved research, i.e. no embryonic research. Every year, Senator Coburn declines to meet with me personally, and the CDRPA is secretly held. An article from Politico has revealed that he is the one holding this bill-and 95 others! A “hold” is an informal practice that allows Senators to block floor consideration of legislation. The only path around a “hold” opens it up to filibuster. Bill sponsors, lobbyists and Coburn's staff never disclosed who was blocking the bill.

    Other earmarks fallen to Coburn's plan to "change the culture of Congress" seem random: breast cancer research, dog fighting, raised pool drains to prevent drowning.

    Controlling federal spending is good. Frequently using one's position to block bills due for passage is an abuse of power. Why has no Senator risked filibuster to call Coburn’s bluff? Perhaps the Senate is in a hurry to get home for vacation. Cowards act in private; the courageous own their actions. Coburn claims to be acting to increase transparency in the Senate, but secret holds hardly promote transparency. They deceive voters and clog Congress’s route to progress.

  9. #99
    If you call Coburn's office, ask for Courtney Cox, the aide on health policy. You won't talk to her. I got sent to voicemail. She was there until she heard my name, then mysteriously stepped out of the office.

    Yeah, well, I've got plenty of time. What with being paralyzed and all.

    I think I'll get magnetic signs for our vehicles. Carl suggested Republicans Against Coburn. Has a nice ring.

    I think Coburn's goals are to increase transparency (i.e. do away with earmarks) and withdraw Congressional direction of the NIH. Yeah well, asshole, sit down and draw up a plan. Simply blocking all bills related to health care is not a plan for changing the funding structure of the NIH.

  10. #100
    Quick, disheartening response to my Letter to the Editor:

    I doubt we can get this in before Congress breaks for Christmas, so it's probably going to be moot.

    J.E. McReynolds
    Your Views coordinator

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