Playing Dress Up

Playing Dress Up
Brenna wearing Mama's hat.

Saturday, September 29, 2012

Letter to Senator Crapo


Pamela G. Blaxton-Dowd

Condemned to Die:  Ask me how. Tell me why.

August 20, 2012

The Honorable Mike Crapo
251 Front Street Suite 205
Boise, Idaho 83702

Dear Senator Crapo:

On May 26, 2010, Brenna, my 27 year old daughter suffered a medically unexplained anoxic brain injury, that occurred as an awful byproduct of an eye surgery she had the day before. Brenna died on October 1, 2011, not as a result of the brain injury, but as what I believe is the most tragic of circumstances, a compilation of inconsistent therapy, poor diabetic care for her Type I diabetes, multiple institutional infections, medical errors that caused internal bleeding and blood clots, a potassium imbalance that almost caused her to have a heart attack, and long term infection from untreated broken teeth.

I have chronicled her nightmarish journey through our broken health care system in a newly released book. In September, with Brenna’s two grieving dogs, I will embark on a three month, personally financed nationwide tour, not primarily as a book tour, but to meet with brain injury victims and their families in every region of the United States. I feel strongly that I must do this to honor my daughter who would expect no less from her mother.

The purpose of this one woman two dog odyssey is to empower other families who are facing a health care system that struggles with answers to rehabilitation and recovery of brain injuries, Traumatic Brain Injury (TBI) and Hypoxic-Anoxic Injury (HAI), and, in my opinion, offers inadequate post injury therapeutic support to both the injured, their family members, and health care professionals who assist in the recovery process.

In my personal visits with health care professionals at all levels, one thing has became abundantly clear; the mysteries of brain injury treatment and recovery care are, in many ways, still great mysteries. As I travel across the United States, I feel it is important for me to be part of a national catalytical dialogue about how this country’s health care system treats brain injuries and how they involve the family in the post injury therapeutic recovery process.

As I prepare for this trip, I wanted to take the time to correspond with you and ask you a few questions that I am getting from brain injury patients and their families around the country. We would appreciate any guidance you could offer about this important issue.

Obviously some of the questions have historical references and some ask about the direction you and others in the Unites States Senate leadership believe this country should be taking in the future of brain injury rehabilitation. This question is asked in light of the increased number of brain injuries reported in federal medical facilities across the country, especially those war related head injuries seen in soldiers returning from Afghanistan and Iraq.

Any information you can offer me in answering the following questions would be greatly appreciated:          

  1. Is there a federally imposed quota system restricting to 35% the number of Hypoxic-Anoxic Injury (HAI) patients accepted to brain rehabilitation hospitals that receive federal funds? In a conversation with a brain injury evaluator from Baylor University last year, the evaluator informed me of a “federally mandated quota” for HAI patients. Additionally, the same evaluator indicated brain injury rehabilitation hospitals were actively working to reduce this quota.
  2. Is there any federal funded research establishing which manufacturing industries report the highest number of cases of HAI or TBI resulting from chemical exposures or work place injuries? If not, do you believe such a study would be helpful to health care professional and who do you believe should conduct such a study?
  3. Are you aware of any statistical information regarding the actual numbers of cases of HAI reported in the United States on an annual basis?
  4. Does the United States government have any statistical information on the rate of success in the utilization of therapeutic hypothermia that prevents further brain injury after the initial brain insult?
  5. Does the Unites States government have any current statistical information regarding the use of HBOT—Hyperbaric Oxygen Therapy for brain injury rehabilitation? Additionally, what is the federal policy concerning the use of hyperbaric chambers that are located at federal medical institutions or at federal military installations? Are members of the public allowed access to these facilities and, if so, under what conditions?
  6. Are there federal guidelines that define Medicare and insurance guidelines concerning hypoxic-anoxic brain injuries treatment and therapy? If such guidelines exist, where can they be found?   insurance company guidelines that discriminate against anoxic/hypoxic brain injury. Since DX codes for anoxic/hypoix brain injury do not include length of coma, unlike TBI DX codes, we need data around length of coma and corresponding outcomes.
    7. Are there any federally recognized experts on HAI rehabilitation?

Senator Crapo, any information or guidance you can provide us will be accepted with both grace and appreciation. I know much of the burden of the research in answering my questions will fall on the shoulders of your staff or other relevant committee staff. For your efforts and theirs I am truly grateful.

Sincerely yours:
Pamela G. Blaxton-Dowd

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