Letter to Rep. Frank Pallone from Sarah Jane Donohue

PUBLIC LETTER via HAND-DELIVERY by Sarah Jane Donohue
Congressman Frank Pallone, Jr.
Cannon House Office Building
Room 237
Washington, D.C. 20515-3006

September 8, 2010

Dear Congressman Pallone;

We are writing to you today as Members of the Steering Committee of the International Advisory Board of the Sarah Jane Brain Foundation to express our concern over the manner in which H. Con. Res. 198 is being handled by you and your staff on the Energy and Commerce Committee and request immediate action by you personally.

The main purpose of H. Con. Res. 198 was to create a political consensus around a plan developed and endorsed by the leading experts from across the country dealing with pediatric acquired brain injury (PABI). With over 110 Members of Congress already endorsing the National Pediatric Acquired Brain Injury Plan (PABI Plan) through their co-sponsorship of H. Con. Res. 198, the proposed gutting of this measure is an insult to those Members who have already signed on as a co-sponsor! In addition, your staff has grossly misrepresented the response of the Centers for Disease Control about the PABI Plan as justification for significantly altering the meaning of H. Con. Res. 198.

As Chairman of the U.S. House of Representatives Energy and Commerce Subcommittee on Health, we are asking today that you publicly commit to having the originally-introduced H. Con. Res. 198 move through the Energy and Commerce Committee upon return from your summer recess next week and allow an up or down vote immediately in the House of Representatives! We think it is very important for the millions of families and professionals across the country who are dealing with pediatric acquired brain injuries every day to know where you stand and other Members of Congress stand on developing a seamless, standardized, evidence-based system of care that is universally accessible for all Americans. We already know where over 110 Members stand on this issue: they endorse the PABI Plan!

According to statistics accumulated from the Centers for Disease Control, pediatric acquired brain injuries are the leading cause of death and disability for American children and young adults from birth through 25 years of age. You have already met twice with the founder of the Sarah Jane Brain Foundation, Patrick Donohue, who named the organization after his five-year-old daughter, Sarah Jane, who suffers from an acquired brain injury due to being violently shaken by her baby nurse when she was just five-days-old, breaking four ribs, both collarbones and causing the severe brain injury. You have told him on both occasions you would look into the matter and get back to him. To date, you have not!

In October 2007, the Sarah Jane Brain Foundation was launched and it has quickly grown into one of the leading organizations in the country dealing with pediatric brain injuries with over 200 International Advisory Board Members from just about every major medical institution (from MD Anderson and Johns Hopkins to Mayo Clinic and Children's Specialized Hospital) and Research University (from Harvard and Yale to UCLA and Rutgers College). Over 75 Members of the Advisory Board came to New York City in January 2009 to create the first-ever (and only) National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care, universally accessible for the millions of children and young adults with a PABI regardless of where they live in the nation. Our efforts have garnered the gold standards of support, including the American Academy of Pediatrics, the American Academy for Cerebral Palsy and Developmental Medicine as well as the American Academy of Neurology!

On June 5, 2009 (Sarah Jane's 4th birthday), we announced the largest healthcare collaboration in United States history dealing with PABI: one institution/organization in all fifty states plus the District of Columbia and Puerto Rico was selected as the SJBF State Lead Center of Excellence to develop and implement a Master PABI Plan for their respective state/territory. For example, Children's Hospital Boston/Harvard Medical School was selected for Massachusetts, Mount Sinai for New York, Mayo Clinic for Minnesota, Kennedy Krieger/Johns Hopkins for Maryland and UCLA for California. The SJBF State Lead Center of Excellence for New Jersey is the Brain Injury Association of New Jersey, which you are aware is not only one of the best state brain injury associations but is comprised of the leading experts throughout the state of New Jersey dealing with brain injuries.

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, FFAP, 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-specialties and pediatric surgical specialists.

Since the PABI Plan was first developed, we have held numerous briefings on Capitol Hill as well as a briefing at the White House last July to educate policy-makers and answer any questions they may have. The response was bi-partisan support of our efforts.

U.S. Senator Jim Inhofe (R-OK), wrote, "Each year, over 1 million American children suffer from some form of Pediatric Traumatic Brain Injury (PTBI). Sadly, too many times, such injuries lead to the premature loss of a child's life or a life-long disability. There is an immense need for more research to be conducted on the human brain, so the important work and information sharing facilitated by The Sarah Jane Brain Project benefits children and their families greatly. I am proud of the leadership and work that Oklahoma State University's Center for Health Science has provided within the state to address the issue of pediatric brain injury."

U.S. Senator Mary Landrieu (D-LA), wrote, "The Louisiana Health Care Quality Forum being selected as a State Lead Center is an integral first step in developing a seamless, standardized, evidence-based system of care for all children affected by Pediatric Acquired Brain Injury. With PABI known to be the leading cause of death and disability among our nation's children, I look forward to working with the Forum to both prevent these devastating injuries and to improve the lives of those families who are affected by them."

U.S. Senator Joseph Lieberman (D-CT) wrote in a letter addressed to Patrick Donohue, "Pediatric Acquired Brain Injury changed your life, as it changed your entire family's life, and yet you have persisted in your goal. I greatly admire your fortitude, your determination and your will to persevere. You have successfully rallied to make a difference in the lives of many people and we thank you for that. I wish you and The Sarah Jane Brain Foundation all the best you pursue this important work."

U.S. Representative Patrick Kennedy (D-RI1) wrote in a letter of support to Patrick Donohue and Hasbro Children's Hospital, "As the leading cause of death and disability for our children, pediatric acquired brain injury impacts not just those specific families but all of us, and we look forward to working with you to both prevent these devastating injuries and to improve the lives of those families who experience them."

As you are aware, last August, the Sarah Jane Brain Foundation, in collaboration with this national network, operationalized the PABI Plan and submitted a $930 million multi-department, multi-year federal grant proposal. This grant would create over 6,000 jobs in every state as well as cover just about every intended goal outlined in the American Recovery and Reinvestment Act of 2009.

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.

The bi-partisan support continued with U.S. Senator John Kerry (D-MA) writing about the $930 million grant proposal, "Thousands of children with traumatic brain injuries will be treated and millions more will be protected from brain injuries as a result of this investment. The Sarah Jane Brain Project has done an incredible job of helping children and partnering with the Children's Hospital Boston/Harvard Medical Center will help them advance their efforts even further. We owe the Donohue Family a huge debt of gratitude for having the strength to turn a heartbreaking personal experience into something that has helped so many."

U.S. Senator John Cornyn (R-TX) wrote about the $930 million grant proposal, "I'm pleased the University of Texas at Dallas for Brain Health has been selected to receive this important funding. The organization's efforts to combat pediatric brain injury continue to serve as an example for Texas. This grant will help them continue with their excellent research and advancements in the future."

U.S. Representative Carol Shea-Porter (D-NH1) wrote about the $930 million grant proposal, "The Sarah Jane Brain Foundation is working with leading institutions from across the country to provide critical resources to families affected by Pediatric Acquired Brain Injury (PABI), and to collaborate with those families and institutions to improve research. I support this grant proposal because it would implement the National Pediatric Acquired Brain Injury Plan and improve the lives of children and young adults suffering from PABI."

Understanding the need for a national political consensus around such a comprehensive plan, Representative G. K. Butterfield (D-NC1), along with 47 original co-sponsors, introduced House Concurrent Resolution 198 on October 13, 2009, which 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 from birth 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 you know, H. Con. Res. 198 was referred to the House Committee on Energy and Commerce immediately after its introduction.

The President of the American Academy for Cerebral Palsy and Developmental Medicine (AACPMD), Dr. Deborah Gaebler-Spina, MD., in her 2009 letter of support thanked Congressman Butterfield for introducing H. Con. Res. 198 and asked Congress to pass it. The AACPMD 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."

The Sarah Jane Brain Foundation was informed in October 2009 that once H. Con. Res. 198 secured at least 100 co-sponsors (with at least 20 serving on the Energy and Commerce Committee), the measure would move through the Energy and Commerce Committee and be presented to the full House for a vote on the suspension of the rules; as all concurrent resolutions which receive such broad support are afforded.

As you know, H. Con. Res. 198 has well over 100 co-sponsors (which it has had since March 2010) and is still waiting to be moved through the Energy and Commerce Committee. In addition, substantive changes have been presented to Representative Butterfield by your staff which would completely alter the original meaning and purpose of the resolution. Here are the proposed revisions (emphasis added to changes in italics and underlined):
"Resolved by the House of Representatives (the Senate
concurring), That Congress -
(1) Recognizes that Pediatric Acquired Brain Injury (PABI) is a
leading cause of death and disability in the United States for children
and young adults from birth up to 25 years of age;
(2) Endorses elements of 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
elements of the PABI Plan."

These are significant alterations to a measure that already enjoys broad-based, bi-partisan support with co-sponsors from over 40 different states.

The first "proposed" change is to state pediatric acquired brain injury is "A" leading cause versus "THE" leading cause of death and disability. The numbers speak for themselves: the CDC estimates there are more than 767,225 American youth who visit the Emergency Department due to traumatic brain injuries each year; 80,715 American youth who are hospitalized due to traumatic brain injuries each year and over 11,200 American youth who die due to traumatic brain injuries each year. These numbers do not even reflect the large number of American youth who sustain a traumatic brain injury each year and never enter a hospital and are not diagnosed, or the number of American youth who suffer from non-traumatic acquired brain injuries (such as strokes, brain tumors, epilepsy, meningitis, hypoxia and many more).

These numbers are staggering when you compare them with the 35-40,000 new cases of HIV/AIDS each year or the combined cumulative cases of autism in the country which stands between 565,000 - 1,200,000, according to the CDC. 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 also add adult brain injuries) receives less than $100 Million annually!

The second "proposed" change is even more significant and completely alters the purpose of the resolution. Instead of having Congress "endorse the National Pediatric Acquired Brain Injury Plan..." the revised version only "endorses elements of the National Pediatric Acquired Brain Injury Plan.." Instead of creating a national consensus around this plan, these changes make the resolution meaningless. Which elements exactly is Congress endorsing? Who decided the elements? What staff member thinks they know more about pediatric brain injury than the Advisory Board of The Sarah Jane Brain Foundation as well as the 100+ Members of Congress who have already endorsed the entire PABI Plan?

It turns out you and your staff have been relying upon an email sent from the Washington, D.C. office of the CDC about the position of Department of Health and Human Services as well as the CDC has on the PABI Plan. Dr. Ronald Savage, who is the President of the North American Brain Injury Society (NABIS), as well as a Member of the Steering Committee of the Sarah Jane Brain Foundation, has had several conversations with Mr. David Guthrie who is the Associate Director for Policy and Partnerships at the Division of Injury Response and National Center for Injury Prevention and Control at the CDC. Mr. Guthrie reviewed the PABI Plan as well as discussed it with other professionals within the CDC who deal with pediatric brain injuries and provided the following statement to Dr. Savage via email on Wednesday, August 25, 2010:

Ron: Marlena and I enjoyed talking with you last week. Marlena especially
looks forward to participating in the NABIS-NASHIA conference in
Minnesota later in October.

Thank you for the opportunity to review the National Pediatric Acquired
Brain Injury Plan. As you know, CDC's National Center for Injury
Prevention and Control (NCIPC) has been charged by Congress to focus on
traumatic brain injury (TBI) for the civilian population of all ages; we
rely on specific ICD-9 CM and ICD-10 codes for how to define a traumatic
brain injury. In addition, NCIPC's work in traumatic brain injury is in
conducting TBI surveillance, developing and disseminating prevention
education materials, and improving diagnosis and initial treatment of
patients of all ages with TBI.

Because of NCIPC's narrowly-defined scope of work for traumatic brain
injury-related activities, and our lack of expertise in TBI-related
long-term treatment and recovery, we feel that the National Pediatric
Acquired Brain Injury Plan is beyond the scope of the Injury Center's
TBI work. This is why, as part of CDC's normal processes in responding
to Congressional requests for comment on health-related legislation,
CDC provided to Congress the following comments on the National
Pediatric Acquired Brain Injury Plan and House Concurrent Resolution
198:

While CDC remains committed to helping improve prevention, detection,
and treatment of pediatric and adult traumatic brain injury, CDC and
HHS do not have a position on the "National Pediatric Acquired Brain
Injury Plan." CDC encourages additional research be dedicated to
developing evidence for appropriate prevention, diagnosis and treatment
of traumatic brain injury; 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.

Therefore, NCIPC has no additional comments to offer on the National
Pediatric Acquired Brain Injury Plan. We do recommend that you consult
CDC's most recent TBI report entitled, TBI in the United States:
Emergency Department Visits, Hospitalizations, and Deaths, 2002-2006,
to ensure that the CDC data cited in the document are the most current;
this document can be found at www.cdc.gov/TraumaticBrainInjury. Also
attached to this message is an article further explaining the coding
related to TBI data.

Let me know if you would like to discuss this issue further. Good luck
in your endeavors!

David Guthrie

As you can see, Mr. Guthrie also provided the exact wording the Washington, D.C. office of the CDC sent to your staff (text in BOLD). staff refused to provide us with this information upon requesting it. It is clearly stated in this email to your staff that the "CDC and HHS do not have a position on the 'National Pediatric Acquired Brain Injury Plan.'"

Finally, by changing the wording from encouraging all "...governments to implement the PABI Plan" and instead "elements of the PABI Plan," the measure has no real meaning!

In addition, in the text of the resolution, the cause "blast injury from war" was removed as a cause of an acquired brain injury. To suggest that our young veterans under 25 years of age have not sustained an acquired brain injury due to blast injury is an insult to these young heroes and their families. We cannot imagine what staff person is advising you that these injuries are not brain injuries. Also, the description of the PABI Plan as a "seamless, standardized, evidence-based system of care, universally accessible" was also completely altered without any explanation.

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.

As stated previously, the main purpose of this resolution was and is to create a political consensus around a plan developed and endorsed by the leading experts from across the country dealing with the #1 cause of death and disability for American children and young adults - brain injury. With well over 100 Members of Congress already endorsing the PABI Plan through their co-sponsorship of H. Con. Res. 198, the proposed gutting of this measure is an insult to those Members who have already signed on as a co-sponsor!

While waiting for your staff to move this resolution, The Sarah Jane Brain Foundation has been working with Chairman John Conyers (D-MI) and the House Judiciary Committee as they have done some incredible work in the area of youth sports concussions. Patrick Donohue testified at a Judiciary Committee hearing in Houston in February 2010 and assisted the Committee with organizing their hearing in New York City in May 2010.

U.S. Representative Steven Cohen (D-TN9) said before the May 2010 Judiciary Committee hearing, "Concussions are dangerous and life- threatening. We know that pediatric acquired brain injury is the leading cause of death and disability for children and young adults. It is vital we do more to educate student athletes about and protect them from the dangers of youth sports concussions." Congressman Cohen is a Member of the Judiciary Committee and is a co-sponsor of H. Con. Res. 198.

Also in May 2010, The Sarah Jane Brain Foundation worked with House Education Committee Chairman George Miller (D-CA7) and his staff with their full Committee hearing titled, "The Impact of Concussions on High School Athletes." Dr. Gerard Gioia, the National Lead Director for "mild TBI" Category of Care within the National Pediatric Acquired Brain Injury Plan and Member of the Steering Committee of the International Advisory Board was one of the key witnesses.

Education Committee Member, U.S. Representative Rush Holt (D-NJ12) said before the hearing, "With millions of brain injuries occurring each year to our nation's youth, and many to our youth athletes, the work we are doing today to examine the consequences of concussions on high school athletes is very important to the overall goal of implementing the National Pediatric Acquired Brain Injury Plan (PABI Plan)." Congressman Holt is a Member of the Education Committee and is a co-sponsor of H. Con. Res. 198.

"Addressing Pediatric Acquired Brain Injury (PABI) is an important issue for our nation's health and for ensuring that our students are able to meet their full potential," U.S. Representative Dina Titus (D-NV3) said before the Education Committee hearing which she is a member. "I am pleased that the Education and Labor Committee is holding a hearing to begin to examine the role schools can play in helping to prevent, detect and treat brain injuries in student athletes, and as a co-sponsor of H. Con. Res. 198, I understand the need to support better care for those who suffer from PABI."

"I co-sponsored H. Con. Res. 198 because we must improve treatment for those whose lives are severely impacted by Pediatric Acquired Brain Injuries (PABI)," U.S. Representative Carol Shea-Porter (D-NH1) said before the Education Committee hearing which she is a member. "These injuries have a devastating impact on too many children and young adults. Concussions are a specific form of PABI and, unfortunately, they are quite prevalent in our school sports. I applaud the Committee for this hearing today."

We respectfully request as you hold your first Subcommittee hearing on the topic of pediatric acquired brain injuries that you publicly commit today to allow H. Con. Res. 198 to be moved through the Energy and Commerce Committee immediately upon return from your summer recess and allow all Members of Congress the opportunity to vote on this measure with an up-or-down vote!

Sincerely,
The Steering Committee, The International Advisory Board of The Sarah Jane Brain Foundation
Lori G. Cook, Ph.D., Center for BrainHealth, University of Texas at Dallas
Roberta DePompei, Ph.D., Department of Speech-Language Pathology, University of Akron
Judy Dettmer, Division of Vocational Rehabilitation, Colorado Department of Human Services
Gerard Gioia, Ph.D., Division of Pediatric Neuropsychology, Children's National Medical Center
Christopher Giza, M.D., UCLA Brain Injury Research Center, Mattel Children's Hospital
Ann Glang, Ph.D., Teaching Research Institute, Western Oregon University
Gillian Hotz, Ph.D., Department of Neurological Surgery, University of Miami School of Medicine
Bryan Hudson, Ph.D., Director, Forensic and Clinical Televideo Development, VoCare Telehealth, Inc.; Medical Consultant, International Mind Brain and Health Initiative, Harvard School of Education
Deborah Little, Ph.D., Department of Neurology, University of Illinois at Chicago
Desmond Runyan, M.D., Department of Social Medicine, The University of North Carolina School of Medicine
Ron Savage, Ed.D., North American Brain Injury Society
Joseph Tepas III, M.D., Division of Pediatric Surgery, University of Florida

CC Via Email (staff is copied as well)
The Honorable Kathleen Sebelius, Secretary of Health and Human Services
The Honorable Nancy Pelosi, Speaker of the U.S. House of Representatives
The Honorable Steny Hoyer, Majority Leader of the U.S. House of Representatives
The Honorable John Boehner, Minority Leader of the U.S. House of Representatives
The Honorable Henry Waxman, Chairman of The Committee on Energy and Commerce
The Honorable Diana DeGette, Vice-Chairwoman of The Committee on Energy and Commerce, Chief Deputy Majority Whip
The Honorable George Kenneth "G.K." Butterfield, Sponsor of House Concurrent Resolution 198, Chief Deputy Majority Whip, Secretary of Congressional Black Caucus, Member of The Committee on Energy and Commerce
The Honorable Joe Barton, Ranking Minority Member of The Committee on Energy and Commerce
The Honorable Ralph Hall, Ranking Minority Member of The U.S. House Energy and Commerce Subcommittee on Health
The Honorable Thomas R. Frieden, M.D., M.P.H., Director, Centers for Disease Control and Prevention (CDC)
Ileana Arias, Ph.D., Principal Deputy Director, Centers for Disease Control and Prevention
Donald E. Shriber, M.P.H., Director, CDC Washington Office
Edward L. Hunter, Associate Director, CDC Washington Office
Andrew S. Rein, Associated Director for Policy
Robin M. Ikeda, M.D., M.P.H., Acting Director, National Center for Injury Prevention and Control [NCIPC], CDC
Edwin Trevathan, M.D., M.P.H., Director, National Center on Birth Defects and Developmental Disabilities [NCBDDD], CDC
Linda Degutis, Ph.D., MSN, Incoming Director, National Center for Injury Prevention and Control [NCIPC], CDC, Yale Center for Public Health Preparedness, Yale School of Public Health
Tochukwu Igbo, Esq., Division of Public Health Policy and Practice, CDC
Jessica Gershick, MS, CHES, Office of Health and Safety, CDC
Jennifer Greaser, Public Health Analyst, CDC
Marlena M. Wald, M.P.H., M.L.S., Epidemiologist, Division of Injury Response, NCIPC, CDC
David Guthrie, Associate Director for Policy and Partnerships, Division of Injury Response, NCIPC, CDC

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Craig Sears
The Sarah Jane Brain Foundation
339 5th Avenue - Suite 405 New York, NY 10016
Phone# 212.576.1180 email: craig@thebrainproject.org
www.thebrainproject.org