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Rep. Frank Pallone doesn't care about kids with brain injuries

by: SarahJanesDad

Sat Oct 02, 2010 at 10:39:13 PM EDT



I thought I should explain the title with some history/details and I would hope you would contact Rep. Pallone directly and ask him to stop blocking H. Con. Res. 198 which is the most broad-based, bi-partisan health care initiative during this entire Congress with over 110 Members as co-sponsors (here are the facts):

Every year millions of American children and young adults up to 25 years of age acquire a new brain injury which makes it the #1 leading cause of death and disability by far (i.e., the total cumulative cases of autism in the entire country is between 565,000 - 1.2 million).  Every time this happens to a family they are stuck having to reinvent the system of care for their child and family.  The system of care is arbitrary from state to state, random from school district to school district and a complete crapshoot from one doctor's office to another.

The causes of Pediatric Acquired Brain Injury can be from trauma (such as motor-vehicle crashes, falls, sports-related concussions, child abuse/shaken baby syndrome, blast injury from war, etc...) as well as non-traumatic causes (such as strokes, meningitis, brain tumors, near-drownings, etc...).

The Sarah Jane Brain Foundation (SJBF) brought together more than 75 of the leading doctors, researchers and family advocates to New York City the first week of January 2009, to complete the first-ever National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based, system of care that is universally accessible for these PABI families.

In June 2009, SJBF announced the largest healthcare collaboration in U.S. history dealing with PABI by announcing one State Lead Center for every state plus D.C. and Puerto Rico to develop a Master PABI Plan for their respective state (since every state is different).  While expanding the International Advisory Board to over 200 experts worldwide, SJBF also received letters of support about the PABI Plan from the American Academy of Pediatrics, the American Academy of Cerebral Palsy and Developmental Medicine and the American Academy of Neurology.

Having established a national professional and family consensus around the PABI Plan, the next step was creating a national political consensus around the PABI Plan.  SJBF had already begun receiving letters of support from US Senators (Cornyn, Kerry, McCain, Inhofe, Landrieu, Lieberman, etc...) and many US Representatives from across the country.

On October 13, 2009, H. Con. Res. 198 was introduced by Rep. G.K. Butterfield (D-NC1) along with 47 original co-sponsors.  H. Con. Res. 198 was referred to the House Energy and Commerce Committee and SJBF was instructed we needed to secure 100 co-sponsors (20 of them from E/C Committee) in order for the measure to move through the E/C Committee and be afforded and up-or-down vote in the full House.

H. Con. Res. 198 states the following, "Resolved by the House of Representatives (the Senate concurring), That Congress -
1. Recognizes that Pediatric Acquired Brain Injury (PABI) is the leading cause of death and disability in the United States for children and young adults up to 25 years of age;
2. Endorses the National Pediatric Acquired Brain Injury Plan as the method to prevent future PABIs and treat all children and young adults suffering from a PABI while supporting their families; and
3. Encourages all Federal, State and local governments to implement the PABI Plan.

As of March 4, 2010, H. Con. Res. 198 has over 100 bi-partisan co-sponsors from 40 different states (20 from the E/C Committee). Since then, Representative Frank Pallone (D-NJ6) and his staff member on the E/C Committee, Camille Sealy have been holding the measure up demanding that the wording be changed to completely gut the original intent of the measure: create a national political consensus around the PABI Plan!  Patrick Donohue has spoken with Rep. Pallone on three separate occasions since May 2010 about H. Con. Res. 198.

For greater details on H. Con. Res. 198, please visit www.TheBrainProject.org/lettertopallone.php

SarahJanesDad :: Rep. Frank Pallone doesn't care about kids with brain injuries
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Should Rep. Frank Pallone allow H. Con. Res. 198 an up-or-down vote in the Congress?
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More than a little confusing (0.00 / 0)
Reading over some information on the bill, it seems that this is just a "sense of the congress" resolution that doesn't actually authorize any governmental action or even funding for action. So the assertion that Rep. Pallone "doesn't care" about this issue is over-the-top hyperbole. Last month, he and Rep. Pascrell held a hearing at the Prudential Center on Pascrell's ConTACT Act, which very specifically addresses youth brain injuries in a meaningful way.

The issue here seems to be relatively minor language issues that stem from the CDC's National Center for Injury Prevention and Control not wanting to endorse every word in your organization's plan. That has everything to do with the sponsor of the bill, your organization and the CDC, not Congressman Pallone. What you're trying to accomplish here seems great, but attacking potential allies doesn't necessarily seem like the best strategy.


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