Sarah Jane Speaks Her Mind To President Obama

July 26, 2010
President Barack Obama
The White House
1600 Pennsylvania Avenue, N.W.
Washington, DC 20500Dear Mr. President:Thank you for inviting me to join you today at the White House for the 20th Anniversary of the Americans with Disabilities Act celebration. Unlike some of your other invited guests, I don’t come here to look back at the accomplishments of the past 20 years, but to look forward to the accomplishments for the next five to ten years! Specifically, I came today to ask you to host a White House Summit on Pediatric Acquired Brain Injuries in the next 30-60 days and call upon the House Energy and Commerce Committee leadership to allow a vote on House Concurrent Resolution 198 by all Members of Congress immediately!

I am a five-year-old New Yorker who was violently shaken by her baby nurse when I was only five days old, breaking four ribs, both collarbones and causing a severe brain injury. The injury was so devastating that I cannot crawl, walk or even speak words to this day — 60% of the rear cortex of my brain was stolen from me by that monster! Since that day, I have joined the millions of other children and young adults across the country who suffer from a pediatric acquired brain injury (PABI).

As I’m sure you already know, PABI is the #1 cause of death and disability for children and young adults in the United States, and the adolescent brain doesn’t finish developing until age 25. According to the Centers for Disease Control and Prevention, there are more than 3,000,000 NEW brain injuries EACH year to American children and young adults! These numbers are staggering when you compare them with 35,000-40,000 new cases of HIV/AIDS each year or the combined cumulative cases of autism in the country (ever) which are between 565,000 – 1,200,000. To put things further into perspective the federal research budget for HIV/AIDS every year is over $3 Billion while the entire brain injury community (if you add another 2 million adult brain injuries) gets less than $100 Million annually (that was not a spelling error – it was “Million” with an “M”)!

PABI can be caused by traumatic events such as what occurred to me (abusive head trauma/shaken baby syndrome), or more common things like motor vehicle crashes, sports-related concussions, blast injuries from war and falls, as well as non-traumatic causes such as epilepsy, meningitis, stroke, brain tumors, AIDS, infection, substance abuse and many other causes.

My daddy, Patrick Donohue, who is with me today, started the Sarah Jane Brain Foundation a few years ago to advance our knowledge of the brain and improve the lives of the millions of children like myself suffering from a brain injury. The foundation started with a simple concept of using open source principles to share knowledge and experiences in order to advance the field of neurology fifty years in the next five years. He started with me: I was the first person in medical history to have all of my medical records posted online in an open source format. From there, he began to ask other PABI families if they would share their experiences and medical history and the Sarah Jane Brain Foundation has quickly grown into one of the leading organizations in the country dealing with pediatric acquired brain injuries. The common theme from EVERY PABI family is the necessity of reinventing the wheel when their child is diagnosed with an acquired brain injury!

You don’t need to go too far within the White House walls to understand the chaos facing families who have a child with a pediatric acquired brain injury. Your close friends, David and Susan Axelrod, have been living with the chaos of having a child with an acquired brain injury for more than a quarter of a century, since their daughter Lauren suffers from epilepsy. As you and Mrs. Obama have shared with the nation, at one point in your own family’s experience you also thought your own daughter, Sasha, had a pediatric acquired brain injury when she was four months old: meningitis.

The system of care for ALL of these millions of families is arbitrary from state to state, random from one school district to another and a crap- shoot from one doctor’s office to another. So my daddy brought together many of the leading experts in PABI from across the country in January 2009, to create 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 the millions of PABI families regardless of where they live in America. With over 1,000 years of combined experience, these experts outlined the current national health crisis dealing with PABI along with its problems and proposed solutions.

The PABI Plan was organized across seven Categories of Care: 1) prevention, 2) acute phase, 3) reintegration phase, 4) adult transition phase, 5) “mild TBI” sub-group, 6) rural/tele-health and 7) the virtual center. Within the PABI Plan, each Category had its current status, the problems and the proposed solution summarized as well as the translational data needed to ensure the solutions were evidence-based.

In addition, since every state is different with different demographics, geography, financing laws, and infrastructure as well as different causes of brain injuries (for example, there are more near-drownings in Florida than in Montana and more snow-skiing incidents in Colorado than in Hawaii), the Advisory Board decided to select one State Lead Center of Excellence for every state plus the District of Columbia and Puerto Rico. These State Lead Centers would have three responsibilities: 1) to develop a Master PABI Plan for their state, 2) to establish a high-level case management system so as soon as an acquired brain injury is diagnosed they would attach themselves to the family and never let go, and 3) each State Lead Center would have a Regional and/or National responsibility around one of the seven Categories of Care.

The President of the American Academy of Pediatrics (AAP), Dr. David T. Tayloe, in his 2009 letter to support the efforts of The Sarah Jane Brain Foundation said, “There is a need to develop a comprehensive approach to the prevention, evaluation and treatment of pediatric acquired brain injuries.” Dr. Tayloe, MD, FAAP, is the 2008-2009 Immediate Past President of the AAP which is the nation’s largest pediatric organization, with a membership of 60,000 primary care pediatricians, pediatric medical sub-specialists and pediatric surgical specialists.

On June 5, 2009, my daddy’s 4th birthday present to me was announcing the largest healthcare collaboration in United States history dealing with pediatric brain injuries: one institution in every state plus D.C. and Puerto Rico was selected as our State Lead Center! This was a major accomplishment in starting to implement the PABI Plan. Some of the leading institutions in the world applied and were selected as the State Lead Center for their respective states.

Then on August 18, 2009, as my daddy’s birthday present to the Honorary Chair of our Advisory Board, Marilyn Spivack (she was the founder of the Brain Injury Association of America), the PABI Plan was operationalized and converted it into a $930 million multi-department, mult-year federal grant proposal. This grant would create over 6,000 jobs in every state as well as cover just about every purpose outlined in the American Recovery and Reinvestment Act of 2009. The seven Federal Departments that are part of this proposal are: HHS, Education, Veterans Affairs, Defense, HUD, Justice and Transportation. We suggested the seven Federal Departments work together to review, rate and implement the grant. As you may recall, you announced a $1 Billion research initiative for autism last summer utilizing the ARRA funds. You also committed to fund $1 Billion annually to autism research by the end of your first term. No such commitment has been made dealing with PABI!

The President of the American Academy of Neurology (AAN), Dr. Robert Griggs, MD, FAAN, in his 2010 letter of support wrote, “Pediatric acquired brain injuries are the nation’s leading cause of death and disability among children and young adults, making the need for a comprehensive approach more vital than ever before. The requested ($930 million) grant would give these children and young adults access to high quality of care, as it would allow for the development of standardized approaches to the prevention and treatment of such injuries.” The AAN is an association of more than 22,000 neurologists and neuroscience professionals dedicated to providing the best possible care for patients with neurological disorders.

Despite all this progress, my daddy knew that the only way to achieve the fundamental changes needed to advance knowledge of the brain 50 years in the next 5 years and implement the PABI Plan, it was necessary to go through political system. So on October 13, 2009, House Concurrent Resolution No. 198 was introduced by Representative G.K. Butterfield (D-NC) along with 47 original bi-partisan co-sponsors to: 1) identify PABI as the leading cause of death and disability for American children and young adults up to 25 years of age, 2) have Congress endorse the PABI Plan as THE plan to prevent, identify and treat these brain injuries, and 3) encourage federal, state and local governments to begin implementing the PABI Plan.

In less than six months, over 100 Members of the United States Congress endorsed the PABI Plan by co-sponsoring the measure. This has been THE most successful bi-partisan effort dealing with health care over the past few years. With such conservative stalwarts as Reps. Pete Sessions (R-TX) and Sue Myrick (R-NC) to liberal icons like Reps. Patrick Kennedy (D-RI) and Jim McGovern (D-MA) supporting the resolution as well as Members from over 40 different states, I am sure you would agree there has been no other health care-related measure with such broad bi-partisan support!

The President of the American Academy for Cerebral Palsy and Developmental Medicine (AACPMD), Dr. Deborah Gaebler-Spira, MD, in her 2009 letter of support thanked Congressman Butterfield for introducing H. Con. Res. 198 and asked for Congress to pass it. The AACPDM is a professional society founded in 1947 with over 1,100 members whose mission is to “Provide multidisciplinary scientific education for health professionals and promote excellence in research and services for the benefit of people with cerebral palsy and childhood-onset disabilities.”

If I told you that one single staff member to a Democratic Member of Congress has been holding back this concurrent resolution for months from being voted on by the Congress, you would think I was crazy. However, that is exactly what is happening. Congressman Frank Pallone’s (D-NJ) staff member on the Energy and Commerce Committee, Camille Sealy, believes she knows better than hundreds of the leading experts who wrote and support the PABI Plan as well as over 100 Members of Congress who have already endorsed the PABI Plan. Ms. Sealy has tried to completely “gut” the intent of the resolution and has told us to take what she is offering or nothing! Ms. Sealy will not answer any direct questions about her reasoning and insists this is a secretive process!

Can you believe an unaccountable congressional staff member has the power to either allow for this concurrent resolution to be voted on or not? As you repeatedly stated during the health reform debate, this measure deserves an “up or down vote” and for it to be side-lined in some secretive process by a congressional staff member twenty years after the passage of the Americans with Disabilities Act is unimaginable!

I would greatly appreciate it if you would ask Congressman Frank Pallone to personally move H. Con. Res. 198 to the floor of the United States Congress as it was originally drafted and written as it accrued over 100 Co-Sponsors and allow for an “up or down vote”? The way the measure is written, even Congressman Ron Paul will probably vote “Yea”!

While my daddy and the SJBF Advisory Board were waiting for the PABI Plan to be endorsed and funded, they were continuing to implement pieces of the PABI Plan wherever they could. That led them to launch the Zackery Lystedt Brain Project in conjunction with the American College of Sports Medicine (ACSM). Founded in 1954, ACSM is the largest sports medicine and exercise organization in the world with more than 30,000 members who are dedicated to advancing and integrating scientific research to provide educational and practical applications of exercise science and sports medicine.

The Zackery Lystedt Brain Project is a national initiative to reduce sports-related concussions in every state. It was launched during Super Bowl week 2010 at the University of Miami Miller School of Medicine. The initiative is named after 17-year-old Zackery Lystedt, who sustained a debilitating brain injury playing football in 2006 after returning to play too quickly following a concussion. The State of Washington passed the Zackery Lystedt Law in May 2009. The three core principles established by the law are (1) requiring the education of youth athletes, their parents and coaches about the risks associated with concussion and head injuries, (2) removing youth athletes from play or practice if a concussion is suspected, and (3) requiring medical clearance by a licensed healthcare provider who has been trained in concussion management before sending them back into a game, practice or training.

The mission of the Zackery Lystedt Brain Project is to advance these core principles throughout the country through public awareness, training, legislation and further research. This year similar legislation have passed in Rhode Island, Connecticut, Virginia, Oklahoma, New Mexico and Idaho with many other states close to passing them.

While the Americans with Disabilities Act is an incredible legacy for former President George H.W. Bush, I would like to suggest the implementation of the National Pediatric Acquired Brain Injury Plan should be part of your legacy.

To start, I would like to formally request you to host a White House Summit on Pediatric Acquired Brain Injury within the next 30-60 days to begin implementing the PABI Plan. My daddy will arrange bringing the leading experts from across the country, all you need to do is pick a date that works on your calendar and ask the seven Cabinet Members whose Departments have a stake in the PABI Plan along with their PABI-related personnel to show up (HHS, Education, Veterans Affairs, Defense, HUD, Justice and Transportation). In addition, Members of Congress should also be invited to attend and participate (especially since H. Con. Res. 198 will be passed by then). The plan is already prepared, now we just need the Presidential commitment and leadership to implement it! My daddy suggested you ask David Axelrod to lead the effort on your end since he has a very personal stake in ensuring the implementation of the PABI Plan!

Your administration has hosted an Entertainment Executive Summit, a Nuclear Security Summit, a Health Care Summit, a Jobs Summit, a Childhood Obesity Summit and even a “Beer Summit” (my daddy said he will explain to me the purpose of the Beer Summit when I’m older). Today would be the perfect day to announce the White House Summit on Pediatric Acquired Brain Injury to implement the PABI Plan.

Thank you for your time and attention to the #1 cause of death and disability for American children and young adults – brain injury!

Sincerely,
Sarah Jane Donohue
Namesake, The Sarah Jane Brain Foundation
Daughter, Patrick B. Donohue, Esq.