Outliers and medical justice: a response to Mr. Henninger
Daniel Henninger’s recent and informative editorial on the recess appointment of Dr. Donald Berwick to head the Centers for Medicare and Medicaid Services (Wall Street Journal, 15 July 2010, p.A15), was a sobering read, especially for my family where my wife, Lorie, is just getting underway with her thirteenth round of fighting cancer.
It prompted me to write to Mr. Henninger (something I just don’t do), and to post my response in this blog.
Here are links to the text and video versions of Mr. Henninger’s original comments:
And here is the letter I wrote:
Dear Mr. Henninger-
Your column in today’s WSJ regarding Dr. Berwick prompts me to write. Thank you for bringing this matter to national attention.
My wife, Lorie, has begun treatment for her 12th re-occurrence of cancer over an 11 year period. She has among the rarest of cancers (uterine leiomyosarcoma) and is an example of being the statistical outlier in every way. She is also an example of the individualized approach to treating cancer where the medical field is now seeing the best and most hopeful advances in treatment. This flies in the face of the excerpted comments of Dr. Berwick that you provide which point to centralized standards, and centralized planning put into effect by people no longer doing research or practicing medicine.
Outliers such as my wife are needed in order to propose new research, develop new protocols and cheaper treatments—the very development of the standards which Dr. Berwick wants to put into place. The problem, though, is that when planning is centralized standards quickly become outdated, and medical justice is ultimately denied to the very people Dr. Berwick would like to help.
9 years ago, my wife was told nothing more could be done and that she should be prepared to enter hospice. Her lungs were filling with tumors after already having half of one lung removed. We moved from Indiana to Wisconsin to be nearer family and for me to raise my children as a single father.
We began working with a new oncologist upon arrival who persuaded us to try something outside normal protocols, and from which something might be learned for future patients. Lorie nearly died during treatment, and has undergone a number of procedures since, but survived to see her son married this year, as well as her daughter graduate from college.
In this newest round of cancer, she will be among the first to go through a cyberknife treatment on four separate occasions. She has lived long enough by trying non-standardized treatment under the best doctors that we are daring to utter the words “chronic condition.” And because this outlying and heroic woman has worked in partnership with her doctors, new patients with similar conditions can begin treatment far less intrusively, far less expensively and with greater hope for long life.
-mark l vincent
p.s. Lorie’s story became a Milwaukee Journal Sentinel article a few years ago, when she had her 7th cancer occurrence. If interested, you can find it at: http://www.redorbit.com/news/health/373416/lorie_vincent_was_told_cancer_would_kill_her_in_months/