Christopher and Dana Reeve Paralysis Act

[betheny]

Now that we have the data about numbers of SCI and paralyzed, those should easily combine with the stats about the cost of those conditions. When the variables are plugged in, the financial costs will be clear, and they will be staggering.

We all know the health benefits of PT, for example. We know that every pressure sore costs us X amount of time, money and health.

Now we need to persuade the powers that be that investing in our health, at both "Care" (for example, FES bikes to increase muscle mass and reduce pressure sores) and Cure (researching curative therapies) levels, is a good financial investment. Investing in GOOD rehab for the newly SCI-How much must that save the government in the long run? Teaching somebody to maximize every last bit of function is so cost-effective, compared to teaching them "You can't cook, tend your kids, do your job or drive. You can't prevent your own pressure sores with diligence and good nutrition, nor UTI's with clean technique and lots of water. You are at the mercy of your injured body, so we'll just pay you a pittance to very slowly and painfully die." (Believe it or not, that is the message in many bad rehabs around this country.) Not to mention the incalculable cost of wasted potential...

So getting this knowledge, this message of hope and potential. out into the general public, and into the hands of those considering healthcare reform, is crucial. It would also be great if rehabs stop presenting these defeatist messages, too. If I'd listened to them in rehab I would never have walked again, and my bone density would be decreasing daily while the number of kidney stones skyrocketed. I'd still be spending money on caths, when given my incomplete injury, they were eventually unnecessary. If I hadn't taken myself off the pee meds as an experiment, I'd never have known my urinary function returned. And since the uro at my rehab flatly told me NOBODY ever regains urinary function, and I had 0% chance of that happening, if I'd listen I'd still be cathing today. It was the rehab techs, that were making $7.50 an hour, that told me he was lying. THEY told me they'd seen people go home, discontinue the meds, and regain that function.

How many people never thought to ask the rehab techs, after the uro told them 0% of sci's regain urinary function?

CDRF's new stats are a great starting point. I am SO glad they took the step of compiling that data!

In my state, we not only have no Model SCI rehab, there is not one single public FES bike. Some people may own their own but there is nowhere you can go for PT and get to use one of those bikes. To the best of my knowledge, there is not one single suspended treadmill system either. Even in the rehabs that have them (like TIRR) the criteria is so stringent that I never saw anybody gt to use it.

All that corner-cutting is really increasing long-term costs of sci. I hope that knowledge makes it into the discussion when it comes to healthcare reform.

[Foolish Old]

All this and more needs to be presented in the national discussion.

We need three things to get this done:

1. A set of talking points upon which most can agree and support. (financially and with political action)

2. A seat at the table when they turn on the cameras and microphones. (this is both figurative and literal)

3. A knowledgeable, articulate and persuasive spokesperson(s) to take that seat(s) and make our case.

Originally Posted by betheny

Now that we have the data about numbers of SCI and paralyzed, those should easily combine with the stats about the cost of those conditions. When the variables are plugged in, the financial costs will be clear, and they will be staggering.

We all know the health benefits of PT, for example. We know that every pressure sore costs us X amount of time, money and health.

Now we need to persuade the powers that be that investing in our health, at both "Care" (for example, FES bikes to increase muscle mass and reduce pressure sores) and Cure (researching curative therapies) levels, is a good financial investment. Investing in GOOD rehab for the newly SCI-How much must that save the government in the long run? Teaching somebody to maximize every last bit of function is so cost-effective, compared to teaching them "You can't cook, tend your kids, do your job or drive. You can't prevent your own pressure sores with diligence and good nutrition, nor UTI's with clean technique and lots of water. You are at the mercy of your injured body, so we'll just pay you a pittance to very slowly and painfully die." (Believe it or not, that is the message in many bad rehabs around this country.) Not to mention the incalculable cost of wasted potential...

So getting this knowledge, this message of hope and potential. out into the general public, and into the hands of those considering healthcare reform, is crucial. It would also be great if rehabs stop presenting these defeatist messages, too. If I'd listened to them in rehab I would never have walked again, and my bone density would be decreasing daily while the number of kidney stones skyrocketed. I'd still be spending money on caths, when given my incomplete injury, they were eventually unnecessary. If I hadn't taken myself off the pee meds as an experiment, I'd never have known my urinary function returned. And since the uro at my rehab flatly told me NOBODY ever regains urinary function, and I had 0% chance of that happening, if I'd listen I'd still be cathing today. It was the rehab techs, that were making $7.50 an hour, that told me he was lying. THEY told me they'd seen people go home, discontinue the meds, and regain that function.

How many people never thought to ask the rehab techs, after the uro told them 0% of sci's regain urinary function?

CDRF's new stats are a great starting point. I am SO glad they took the step of compiling that data!

In my state, we not only have no Model SCI rehab, there is not one single public FES bike. Some people may own their own but there is nowhere you can go for PT and get to use one of those bikes. To the best of my knowledge, there is not one single suspended treadmill system either. Even in the rehabs that have them (like TIRR) the criteria is so stringent that I never saw anybody gt to use it.

All that corner-cutting is really increasing long-term costs of sci. I hope that knowledge makes it into the discussion when it comes to healthcare reform.

[antiquity]

Originally Posted by Chris Chappell

Who cares who gets the credit, etc. If progress and compassion are truely the goals then being thankful and appreciative, regardless of political persuasion should rule the day and our collective conscience.

Agreed. I can't imagine Harkin, Bilirakis et al feeling slighted because they weren't credited by CBS, I think they're just happy that the bill was passed, that we have a pro-science President and that Coburn is no longer playing power games. Things are finally progressing and for that I am grateful.

I wasn't worried that Obama wouldn't sign the CDRPA bill or lift the ban. Likewise, this administration is committed to reforming health care so I doubt if we'll encounter any obstacles there. Medicaid and the VA health system received a huge infusion of funds through the stimulus with more allocated in the 2010 budget. The CDRPA bill will also be funded. We finally have people in Congress committed to advancing the issues important to us so half of the battle is over, it's a waiting game now.

Steven or anyone, do you know when the 25 million is due to be voted on or appropriated? Is the expectation that the CRF's new data will influence how much is given?

TIA.

[Chris Chappell]

Antiquity; Agreed. It's not a question of "if" it's a question "when". Federal monies speeds up the "when".

Congrats to everyone who's participated in the effort, regardless of the part played.

In life, I think we each can choose a path of either being part of the problem or part of the solution.

Onward and upward.

[Steven Edwards]

Originally Posted by antiquity

Steven or anyone, do you know when the 25 million is due to be voted on or appropriated? Is the expectation that the CRF's new data will influence how much is given?

TIA.

The $25 million for the QoL portion, without modifications, won't be increased. I would be surprised if the newer numbers don't lead to an increase in the number of grants awarded for paralysis research. (We know quality applications need to be submitted for this to happen, of course.)

The battles in the respective Appropriations subcommittees (Senate, House) have yet to be scheduled, but I would bet sometime in August or September.

[leschinsky]

Originally Posted by antiquity

Likewise, this administration is committed to reforming health care so I doubt if we'll encounter any obstacles there .

Hopefully, but I think we shouldn't take it for granted because I'm sure we'll hear much fear mongering about 'socialism'. We should counter those loud voices.

[Foolish Old]

Do you want some government bureaucrat getting between you and your doctor?

(no, I'd much rather have some profit driven corporation filling that role )

Originally Posted by leschinsky

Hopefully, but I think we shouldn't take it for granted because I'm sure we'll hear much fear mongering about 'socialism'. We should counter those loud voices.

[leschinsky]

Originally Posted by Foolish Old

Do you want some government bureaucrat getting between you and your doctor?

(no, I'd much rather have some profit driven corporation filling that role )

Luntz is already on it, opposing a plan that doesn't exist.
http://www.politico.com/news/stories/0509/22155.html

[Foolish Old]

Thanks Les,

Everyone should read this article. It presents the Republican strategy to confuse and frighten Americans during the coming debate about healthcare reform.

So predictable, and so sad. Imagine if we had two political parties working to solve the healthcare crisis (yes, it is a crisis). Right now, we have a few brave and caring Republicans putting their shoulder to the wheel and helping with the work. But the vast majority of Republicans, and the party leadership, are just about protecting the financial interests of the status quo system that enriches their patrons. The very system they demonize is the one that provides Congress with excellent government managed healthcare. It's great for them, but bad for ordinary Americans? Please! Have they no shame? Okay, stupid question.

Have enough people wised up to the scare tactics? Will reform proponents win the message contest?

Until we, the American people, think for ourselves and look objectively at the facts, we will be the sheep of the spinning shepherds. Knowledge can overcome fear born of ignorance and lies. The Republicans and their Democratic allies who are wholly owned by corporate interests are not working for us. We can't let them continue to scare us with lies and misinformation. We MUST learn the facts, unite and scare them into doing the right thing.

Originally Posted by leschinsky

Luntz is already on it, opposing a plan that doesn't exist.
http://www.politico.com/news/stories/0509/22155.html

[Chaz19]

Originally Posted by Steven Edwards

The $25 million for the QoL portion, without modifications, won't be increased. I would be surprised if the newer numbers don't lead to an increase in the number of grants awarded for paralysis research. (We know quality applications need to be submitted for this to happen, of course.)

The battles in the respective Appropriations subcommittees (Senate, House) have yet to be scheduled, but I would bet sometime in August or September.

Thanks Steven! Do you happen to know who is steering the research?