Pallone ignored the wrong brain-injured, 5-year-old little girl (Sarah Jane)

This diary says it all (0.00 / 0)

Like beauty, political interpretation is in the eyes of the beholder.  Behold this "commercial" and draw your own conclusions.

http://christiegonewild.blogsp...

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by: ken bank @ Wed Oct 27, 2010 at 02:31:02 AM UTC

Here's one "constructive" question (0.00 / 0)

Why don't you post using your real name, like almost everybody else on this website, instead of literally hiding behind your 5-year-old little girl.

Seems to me if your cause was legitimate you would want to use your real name.

http://christiegonewild.blogsp...

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by: ken bank @ Wed Oct 27, 2010 at 03:09:12 AM UTC

You really think that is a constructive question? (0.00 / 0)

After reading through the letter to Mr. Pallone which provides all of the facts and history surrounding the most broad-based, bi-partisan healthcare initiative during the entire Congress that Mr. Pallone is blocking as Chairman of the Subcommittee on Health (www.TheBrainProject.org/lettertopallone.php), do you really think I am somehow "hiding" my identity with my moniker "Sarah Janes Dad"?

Why don't you take a few minutes to read my recent letter to my five-year-old little girl that explains in detail what we are doing and why we are doing it and then let me know if you think I am still "hiding" something: www.TheBrainProject.org/lettertosarahjane.php

Sincerely,
Sarah Jane's Dad!

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by: SarahJanesDad @ Wed Oct 27, 2010 at 15:06:08 PM UTC

[ Parent ]

As a parent (0.00 / 0)

the story is chilling. However, I have to wonder two things:
1) How do you know that Pallone is "holding" the bill?
2) Why would you be happy that Little, who is philosophically opposed to public spending and, if anything, would be more like to hold up exactly the type of laws that would benefit your child?

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by: Thurman Hart @ Thu Oct 28, 2010 at 23:04:56 PM UTC

Thanks for your question (0.00 / 0)

Rosi,
I know Pallone is holding it up because I spoke with his staff member on the Energy and Commerce Committee, Camille Sealy, who told me she was holding it up unless we accepted the water-down version!  And when I asked her for specific information about why, she told me it was a "secret" process and she wouldn't tell me any more!
I personally met with Congressman Pallone THREE times to discuss this with him and each time he gave a casual "we will look into it" brush off.
With regards to Anna Little, for all the bashing she takes on this blog; once she was presented with the details of H. Con. Res. 198 she immediately said she could support the measure and was horrified that Congressman Pallone would block it from an up-or-down vote.
If Frank Pallone won't allow a concurrent resolution which doesn't appropriate any funds or change any laws for a simple up-or-down vote in the Congress (after it has over 110 co-sponsors), why would ANYONE support such a person for Congress?
All the best,
Patrick (Sarah Jane's dad)

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by: SarahJanesDad @ Fri Oct 29, 2010 at 14:20:09 PM UTC

[ Parent ]

I'm not Rosi (0.00 / 0)

but thanks for the compliment.

Something is being left out of the story being told.

The Resolution is being held because it is feared it would be used as leverage to acquire new funds for expanded research. Why would they think such a thing? Well, maybe because The Brain Project claims to have submitted an $930 million grant proposal already - indicated that they will, in fact, look for greater funding. I'd be interested in hearing if Anna Little endorses spending nearly a billion dollars on brain injury research (and I want to make it clear - I think we should be sinking money into this research...although a billion is a lot of money). If I were in Pallone's shoes, this would raise a big warning flag for me, as well.

Beyond that, the Resolution expresses the belief that funding and research should be expanded beyond the current existing legislative mandate. This is why the National Center for Injury Prevention and Control refused to take a position. And it's why the CDC told Congress "the current evidence base in this area is limited and CDC does not believe it is adequate to support a national plan of this magnitude."

So you are right that the changes in the "watered-down" version would be substantive. It would:
1) Change "THE leading cause of disability and death" to "A leading cause..."
2) Endorse "elements of" the PABI plan rather than the whole thing
3) Encourage implementation of "elements of" the PABI plan rather than the whole thing
4) Eliminate "blast injury from war" as one of the causes of brain injury (which, far from the claim on thebrainproject.org, does not mean it isn't worthy of study - I would guess that issue is being taken up elsewhere).

I understand it isn't what you want. But if the goal is to get the ball rolling on a central repository of knowledge that can be used to guide and encourage research into diagnosing and treating brain injury, I see no reason not to accept what is given. Take it, gather more data, then go back and ask for more. That's just the way the policy process works.

That's also true of the sponsorship versus committee assignment. Sponsorship does not indicate that a Member believes the legislation should move forward exactly as written - it means they want the responsible committee to take it up and work on it. But if the organization asking for action is attacking committee members for what amounts to doing their job, it probably isn't going to move forward.

This is my recommendation: You were smart enough to get expert help on the medical side of things. Get some expert help on the legislative side of things as well.  Then maybe you'll understand how much is actually being offered.

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by: Thurman Hart @ Sat Oct 30, 2010 at 14:00:23 PM UTC

[ Parent ]

Nothing is being left out... (0.00 / 0)

From where do you draw your conclusions about why Congressman Frank Pallone is blocking this measure from an up-or-down vote?

Of course we would like significant additional funding for brain injury research (I don't think that has been hidden)!

You claim a billion dollars (over two years) is a lot of money for the #1 leading cause of death and disability for American children and young adults, do you think the $3-4 BILLION that funds HIV/AIDS research ANNUALLY is a lot of money?  There are millions of NEW brain injuries every year and there are 35-40,000 new cases of HIV every year.  I would like to know your position on this?

Over 110 Members of Congress had an opportunity to consider H. Con. Res. 198 and its implications and they signed on as a co-sponsor.  Having one Member of Congress (Mr. Pallone) completely gutting its intent and then suggesting we should just accept it really doesn't qualify as much of a compromise!

If you read the CDC's position they say the issue is too big for their mandate and more data is needed in this area -- what the heck do you think the PABI Plan is -- it is a major research project to develop a seamless, standardized, evidence-based system of care that is universally accessible for the millions of families who have a child/young adult suffering from a brain injury?

You also suggest we should accept Mr. Pallone's gutting of the resolution to "get the ball rolling on a central repository of knowledge that can be used to guide and encourage research into diagnosing and treating brain injury", please explain in detail how Mr. Pallone's proposed changes DOES THAT?

I appreciate your recommendation but I think you need to spend a little more time understanding what you are even recommending!

Either Mr. Pallone thinks he knows more than the leading experts or he doesn't care about families who have a child/young adult with brain injuries!

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by: SarahJanesDad @ Sat Oct 30, 2010 at 15:37:39 PM UTC

[ Parent ]

The last thing you want to do is start attacking me (0.00 / 0)

I get "my conclusions" about why the vote is being blocked directly from the steering committee of The Brain Project:

We were told the reason your staff is requiring these changes before moving the measure through the committee is over concern that once this resolution is passed that we would ask the Obama Administration to begin funding the implementation the PABI Plan.

I don't like being attacked, and I don't like being lied to and played for a sucker. Previously, you said, "If Frank Pallone won't allow a concurrent resolution which doesn't appropriate any funds..." Now you are saying, "Of course we would like significant funding..."

You can't have it both ways. And I'm beginning to see why you're having trouble.

My position is that you are trying to compare apples and oranges. You want to spend $1 billion in ADDITIONAL spending with $3-4 billion that is already budgeted. But you aren't telling us how much is already spent on brain injury research. I'd like to see a lot more money sunk into research, but it isn't going to happen. Especially not if Republicans take over Congress.

As to "one member of Congress gutting..." - well, that's the way Congress works. But it isn't gutting anything. Changing it, yes. But it will still be a giant step forward in exactly the direction you want it to be moving. Obviously, you don't understand the process of bill sponsorship or how committees in Congress work.

When the CDC says the scope of the project is larger than their Congressional mandate, it means that they are prohibited from commenting either positively or negatively on the matter. What you are asking is for Congress to expand a research mandate beyond that which is already established. That is no small thing.

The proposed changes would get the ball rolling by recognizing the need for greater attention at all levels of government. If you can't understand the benefit of that; then you are truly quite above your head in the matter.

All I am suggesting is that you talk to someone who actually understands how Congress works - either a lobbyist or a political scientist who studies Congress. You criticize Mr. Pallone for neglecting the expertise of medical personnel, but you seem to believe there is no specialized knowledge to be had concerning how to get things through Congress. I'm not sure if that is ignorance or simple hubris, but either way, it's a recipe for disaster.

I have no idea what Mr. Pallone thinks, but I'm sure he knows a hell of a lot more about the implications of federal law than you do. Instead of vilifying him, you might try listening to his staff's recommendations. Not everyone who refuses to give you 100% of what you want doesn't care or has some alternative agenda.

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by: Thurman Hart @ Sat Oct 30, 2010 at 19:32:38 PM UTC

[ Parent ]

Now you are claiming to be "under attack"??? (0.00 / 0)

If you received all of your information from our website, how could you claim there was something we weren't telling?

Let me explain this as simply as possible:
1. Brain injuries in children and young adults are the leading casue of death and disability BY FAR in America (millions EVERY YEAR)
2. We brought together the leading experts in the country in brain injury to create a National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care for the millions of families who have a child/young adult suffering from a brain injury.
3. We began to implement the PABI Plan by announcing the largest healthcare collaboration in US history dealing with brain injury (one State Lead Center for every state plus DC and PR)
4. Our efforts have the support of the American Academy of Pediatrics (AAP), the American Academy of Cerebral Palsy and Development Medicine (AACPDM), the American Academy of Neurology (AAN) and many others.
5. The Secretary of the Congressional Black Caucus, Congressman G.K. Butterfield (D-NC) introduced H. Con. Res. 198 along with 47 original co-sponsors
6. The purpose of H. Con. Res. 198 was to create a national political consensus around the PABI Plan -- we purposefully separated the funding of the plan so we could first establish a consensus around "the plan to prevent, identify and treat these brain injuries"
7.  EVERY resolution that receives over 100 co-sponsors is afforded an up-or-down vote in the Congress (there are very few that ever achieve such a high threshold)
8. Within 6 months we secured over 100 bi-partisan co-sponsors from 40 different states (Dems, Reps, Liberals, Moderates, Conservatives)
9. Congressman Frank Pallone refused to allow H. Con. Res. 198 from moving through his sub-committee unless we accepted a complete gutting of the resolution.

Those are the facts - very straightforward!

THIS IS UNACCEPTABLE and if you had a child or loved one suffering from a brain injury and ONE Member of Congress refused to even allow an up-or-down vote on a consensus about preventing, identifying and treating that brain injury, I am certain you would be so cavalier in your remarks or thinking!

I have been around politics my entire life at a pretty high level of interaction so I am well aware of how Congress works (there are very few resolutions that get over 100 co-sponsors) so I don't think I need any help on that front!

Congressman Pallone MUST be held accountable for his actions and that is exactly what we are doing!  As a citizen you should be holding him accountable too!

Thank you again for your interest and comments and I hope this clarifies some of your questions.

Most importantly, I ask that you pray for Sarah Jane and the millions of children just like her across the country (and around the world).

Sincerely,
Sarah Jane's dad

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by: SarahJanesDad @ Mon Nov 01, 2010 at 15:13:14 PM UTC

[ Parent ]

There is a difference (0.00 / 0)

between YOU telling everything and the information being out there to find if someone digs deeply enough.

And, again, it is far from gutting the legislation. I've seen legislation amended so that every single word is stricken and replaced entirely with another bill.

Beyond that, you are entirely unaware of anything me or my loved ones have suffered. It's pretty arrogant for you to decide my family is unaffected and then condemn my advice as being cavalier.

Nor did I either offer my help or suggest I was someone who could help. I simply suggested that you find someone who can. Yet you openly admit that you intend to use the "consensus" to push for greater funding, but pretend not to understand why any reasonable person would seek to ease the language of the bill. Any weathered political operative would tell you that you take the 90% that is offered unless you are assured of total victory. You may have been around things, but you are too emotional to give yourself good advice (and understandably so).

And that brings me back to the questions that you have never addressed at all. Do you really think a Republican led Congress will be more responsive? Even if they pass the existing resolution, do you think they'll move to appropriate one single dollar for your cause?

It just doesn't seem likely to me at all. In fact, it seems to me that the fastest way to make this nothing more than a symbolic victory is to do just that (and that would be the best case scenario). I say that because Rep. John Shimkus, the ranking member on that subcommittee, is not one of the co-sponsors. All things being equal, he's the likely chair of that subcommittee should Republicans take control and he's shown no indication of support for your cause.

Mr. Pallone is not in my district, so I have no means of holding him accountable - since he isn't accountable to me at all. I have no problem with you using your free speech to advocate for your cause. I only find fault with the logic of trying to take down someone who is willing to give you 90% of what you ask for and replace them with someone who will most likely not. It's the sort of thinking that has led the country to take wild swings from one side to the other.

As for the prayer request, you had them before you even asked. I pray that no one ever has to endure what you've had to endure. If prayers could change the past, I'd pray that those horrible events could be taken back.  

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by: Thurman Hart @ Mon Nov 01, 2010 at 21:02:57 PM UTC

[ Parent ]