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Brenna’s Hope Foundation
A Voice
of Brain Injury Education and Awareness
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July 14, 2013
Secretary Kathleen Sebelius
United
States Secretary of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Honorable Kathleen Sebelius:
My concern for hypoxic-anoxic brain injuries is three-fold: 1) The definition of “traumatic brain injury”
as it appears in the Traumatic Brain Injury Act of 2008, 2) the lack of data
for hypoxic-anoxic brain (HAI) injuries with the Center for Disease Control,
and 3) the lack of clear definition in the ICD code for HAI .
Three years ago, my only child suffered a hypoxic brain injury
after her fourth eye repair surgery to correct damage she obtained in an auto
accident the year before. We were thrust into a world of unfamiliar medical
terminology, the “let her die” attitude, and given no hope of recovery. Her
brain stem was healthy. Most of her brain was not damaged and the second
neurologist said it was too early in those first days to assess damage. As I worked with Brenna for over 6000 hours
in the next 16 months, I realized that our medical system was fraught with too
many with obstacles to allow the optimal recovery of a hypoxic-anoxic brain
injury. While looking for answers, I
discovered the Traumatic Brain Injury Act of 2008.
First: I am particularly concerned about page 7,
lines 4-9 and page 10, lines 22-25:
Page 7,
lines 4-9:
(c) Definition- For purposes of this section, the term `traumatic brain injury'
means an acquired injury to the brain. Such term does not include brain
dysfunction caused by congenital or degenerative disorders, nor birth trauma,
but may include brain injuries caused by anoxia due to trauma including near
drowning. The Secretary may revise the definition of such term as the
Secretary determines necessary.'."
Page 10, lines 22-25
The
Secretary may revise the definition of such term as the Secretary determines necessary, after consultation with States
and other appropriate public or nonprofit private entities.’’;
This bill gives you the authority to revise the definition as
you feel necessary. Anoxic injuries are caused by many other conditions, most
of which are not near drowning. In my daily contacts with families who have a
loved one with an HAI, other conditions that cause an HAI are more common.
These include asthma attacks, sudden cardiac arrests (SCA), complications
following surgery, and toxic exposures.
The language of the TBI Act of 2008 as it affects acquired brain
injuries appears ambiguous at best. I respectfully request that you consider a
change to clarify the status of all those with an acquired brain injury. I am
including a definition as given by the Kentucky General Assembly.
In 1998, the Kentucky General Assembly identified a Traumatic
Brain Injury as:
Traumatic brain injury (TBI), as
defined in statutes KRS 211.470 to 211.478, is a partial or total disability
caused by injury to the central nervous system from physical trauma, damage to
the central nervous system from anoxia, hypoxic episodes, allergic conditions,
toxic substances, or other acute medical clinical incidents resulting in
impaired cognitive abilities or impaired physical functioning. TBI does not
include strokes treatable in nursing facilities; spinal cord injuries;
depression and psychiatric disorders; progressive dementias and other mentally
impaired conditions; mental retardation and birth defect-related disorders of a
long standing nature; or neurological degenerative, metabolic, and other
medical conditions of a chronic, degenerative nature.
My second concern is
the apparent lack of reporting criteria for HAI with the CDC. A search of their
site does not give adequate information on the numbers of HAI in the United
States. The causes of an HAI are as
identifiable as those who suffer the more commonly known TBI, caused by blunt
force trauma or penetration of a foreign object.
Third: The ICD for hypoxic-anoxic injuries needs to
be expanded. While TBIs are easily identifiable based on cause of falls, auto
accidents, domestic violence, and other known causes, HAIs may also have a
clear cause besides near drowning. For
example, asthma attacks, SCA, surgical complications, and toxic exposures.
I respectfully ask for your consideration of these three
concerns for people who suffer an HAI, that they may gain access to the same
levels of care as those with the more commonly known TBI.
Sincerely:
Pamela G. Blaxton-Dowd
Founder: Brenna’s Hope Foundation
RESPONSE FROM US DEPARTMENT OF HEALTH AND HUMAN SERVICES
August 9, 2013
Dear Ms. Blaxton-Dowd:
I am writing in response to your letter to Secretary Sebelius
expressing your concerns about the definition of traumatic brain injury (TBI).
She asked that I respond to you because the section of the TBI Act of 2008 you
inquired about relates to the Center for Disease Control and Prevention’s TBI
prevention work, performed here at the National Center for Injury Prevention
and Control (NCIPC).
First, I want to thank you for reaching out. Your account of
Brenna’s injury and the aftermath is moving, and your efforts to advance brain
injury education and awareness through Brenna’s Foundation are an inspiration.
I am sorry for your loss and commend your hard work on this important issue.
In your letter, you asked that HHS consider revising the
definition of TBI found in the TBI Act of 2008. You expressed concern that this
definition (which includes “brain injuries caused by anoxia due to trauma
including near drowning”) would exclude causes of anoxic brain injuries other
than those caused by near drowning. However, the language “including near
drowning” does not exclude other causes. Rather, it specifies that near drowning
should be specifically included. In support of this point, I would direct you
to 42 U.S.C . § 280b-1—the main
Federal law authorizing CDC’s TBI work—which uses nearly identical definition
for TBI but does not use the “including near drowning” language:
For the purposes of this section,
the term “traumatic brain injury” means an acquired injury to the brain. Such
term does not include brain dysfunction caused by congenital or degenerative
disorders, nor birth trauma, but may include brain injuries caused by anoxia
due to trauma.
More importantly, you are correct that both the TBI Act and the
CDC’s NCIPC do tend to emphasize the prevention of brain injuries caused by
traumatic events like care crashes and falls. But this does not mean that
hypoxic and anoxic brain injuries (HAI) that are caused by events like cardiac
arrest and toxic exposures are not studied elsewhere at CDC and the Federal government.
As you know, HAI can be caused by any medical condition or incident that
deprives oxygen to the brain. Scientists at other Centers within CDC are working
to advance prevention of these other potential causes of HAI, like our Division
of Heart Disease and Stroke Prevention or CDC’s National Center on Birth
Defects and Developmental Disabilities.
This focus on preventing the underlying causes of HAI helps
explain the reporting issues you mention in your letter. You are right that
public health surveillance is not routinely conducted for HAI as a medical
outcome. Public health surveillance generally examines the underlying
conditions or circumstances that can lead to HAI, like stroke and
cardiovascular disease, which will better inform prevention efforts than
surveillance solely of specific outcomes. This may explain some of the difficulty
you had finding conclusive statistics on the incidence of HAI.
Finally, you also asked that the ICD codes of HAI. While there
are ICD-9 codes for HAI, they are not included in CDC’s ICD-9 definition for
TBI. This is for reasons explained above—our TBI definition tends to focus on
those injuries caused by traumatic events like car crashes or falls, given our
expertise in injury prevention. The expansion of ICD codes, which you mentioned
in the letter, falls outside of CDC’s control. The World Health Organization is
responsible for ICD code definitions.
Thank you again for your letter and your efforts to advance TBI
awareness and education.
Sincerely,
Linda C. Degutis, DrPH, MSN
Director
National Center for Injury Prevention and Control
Centers for Disease Control and Prevention
