Letter to Congressional Brain Injury Task Force

This is the letter I have sent to Rep. Pascrell and Rep. Platts as the Co-Chairs of the Congressional Brain Injury Task Force. Please feel free to use this letter as a guideline if you wish.

Thanks. We CAN save a brain.

Pam
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April 10, 2012

The Honorable Bill Pascrell
Co-Chair: Congressional Brain Injury Task Force
2370 Rayburn House Office Building (HOB)
Washington, DC 20515
202-225-5751
202-225-5782 Fax 

Honorable Representative Pascrell:

I am the mother of a young woman who suffered a medically unexplained anoxic brain injury in May 2010. From the very beginning, her journey to recovery was marked with out-dated ideas and opinions, based on non-existent studies regarding anoxic or hypoxic brain injuries. It greatly disturbs me that even today, the Center for Disease Control is not collecting information about anoxic or hypoxic brain injuries as they do for TBI, nor do they offer research opportunities for those who can research ABI treatment and rehabilitation.

Your web site states that the Caucus should consider Acquired and Traumatic brain injury the same. Reality demonstrated to me, and many other families, is that there is no resemblance of an ABI being treated even close to the same as a TBI.

I am deeply concerned about verbiage in H.R. 4238, the Brain Injury Act of 2012 and that Acquired Brain Injury is no longer mentioned in the verbiage.

After much soul searching and researching, I come to you with this suggested change to H.R. 4238, the Brain Injury Act of 2012. I do thank you for your consideration and your time. While I am not one of your constituents, a decision this committee makes has a profound impact on many families across the nation.

After many months and over 6000 hours by my daughter’s side, I have many ideas on how treatment for ABIs can be improved. The 1990 Pepper Commission indicated that three patients can be cared for at home for the cost of one in a nursing home. All I wanted to do was bring my daughter home.

The professionals will give many arguments as to why it costs so much to take care of an ABI. A brain injury rehabilitation hospital in Texas informed me that they have a quota of 35% ABIs that they must treat and were actively working in Congress to get that number reduced. Such an act would be a great disservice to thousands of patients across the country.

I am convinced that given the right resources and training, families can bear much of the responsibility for recovery. It takes time and a familiar environment. However, those suggestions are for another time. I plan on coming to DC soon, bringing my suggestions for change in how anoxic/hypoxic brain injuries are treated.

Sincerely yours:

Pamela G. Dowd
Mom to my beloved Brenna Deshawn

Inc: Suggested change to H.R. 4238, the Brain Injury Act of 2012

 H.R. 4238, the Brain Injury Act of 2012    Suggested changes

An acquired brain injury (ABI) is any injury to the brain that occurs after birth that prevents the normal function of the brain. Traumatic brain injuries and non-traumatic brain injuries are acquired brain injuries.

Acquired Brain Injury

     —Traumatic Brain Injury

     —Non-traumatic brain injury
           —Hypoxic and Anoxic Brain Injury

Traumatic brain injury (TBI) is an insult to the brain from an external mechanical force, possibly leading to permanent or temporary impairment of cognitive, physical, and psychosocial functions, with an associated diminished or altered state of consciousness

Non-traumatic brain injury may be caused by stroke, heart attack, near-drowning, brain tumors, infectious diseases, prolonged high temperature, decrease or loss of oxygen to the brain, metabolic disorders such as diabetic coma, and toxic exposure from substances such as lead, pesticides, drug and alcohol abuse.

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Representative Platt's contact info:

The Honorable Todd Platts
Co-Chair: Congressional Brain Injury Task Force
2455 Rayburn House Office Building
Washington, DC 20515
Phone: (202) 225-5836
Fax: (202) 226-1000