Pituitary Centers of Excellence: For Patients It Is Life or Death

Knutzen, Robert

doi: 10.1227/NEU.0000000000000153

Newbury Park, California

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To the Editor:

I feel compelled to reply to the comments posted by various physicians/neurosurgeons with regard to your most sensible recent article suggesting the creation of centers of excellence for pituitary disorders, adenomas, and diseases. On behalf of patients, I will state that I have an inkling of the feelings and opinions of the professionals involved, but I believe we, the patients, have more vested (our lives) in the outcome of this proposal than most healthcare professionals may be willing to recognize or admit.

The comments and opinions of some of your readers would lead the casual observer to ponder at whom these comments were directed. Although having both a great personal and professional interest expressed in the opinions of some of the surgeons, it becomes crystal clear that some of your readers see the patients and issues under discussion as primarily “dollars and cents” problems requiring market/cost-driven solutions. I have over this period of time been an acromegalic patient for the better part of 76 years, 23 years as a patient advocate, leader, and close observer of all things relating to pituitary education and advances.

Having been in the business world for >50 years, I agree in principle with the concept of centers of excellence while desiring to make it absolutely clear that medicine must function under a different set of rules than, for instance, a restaurant, although similarities are striking and unarguable. Public health and socially accepted rules for health and safety precede every other law, rule, and regulation put in place to save lives and human health while maintaining a viable and robust commercial environment to the satisfaction (we hope) of both the innkeepers and the consumer/restaurant patron.

First, we need to agree that pituitary adenomas/disorders are not in fact a primarily surgical problem to overcome. The problems and therefore the solutions are so multifaceted and difficult to enumerate that a wise surgeon knows when additional specialization is needed and ensures that the patient receives the care and attention required. (He/she also recognizes when his/her skills and professional care are not needed, and uppermost in his/her mind is: Whom should see this patient next?)

An apprentice/intern/residence program already exists in medicine. How with any degree of credibility can anyone possibly propose that with all the advances in medicine no more advances in pituitary patient care are needed? And yes, we know that apprentices/trainees worked on most of the world’s grand manmade creations from art to cathedrals. How in the name of rational discourse can anyone argue that we have advanced far enough and that little more is needed? With few exceptions, from the hundreds of patients who contact us every year, we have no choice but to conclude that both surgical and medical outcomes in patient treatment are closely linked to training and numerical surgical experiences in the facility where the patient is being treated. I was first acquainted with the concept of pituitary centers of excellence through Dr Charles Wilson, the “near pioneer” in pituitary surgery at University of California, San Francisco, nearly 22 years ago. Dr Wilson is now retired, but I well remember his frustration over the numerous “re-do's” he was called on to handle and the damage that was done by medical/surgical colleagues with very little experience in this area of medicine.

I guess my little epistle may be considered a rant by some, but I hope we can all agree that patient input and experiences have their places in modern medicine and deserve to be considered before being objected to.

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The author has no personal financial or institutional interest in any of the drugs, materials, or devices described in this article.

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