Letter to Kathleen Sebelius and the response

Brenna’s Hope Foundation A Voice of Brain Injury Education and Awareness

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