An article from May 2011's Endocrine Today explains that there is an endocrinologist shortage that only looks to be worsening. It explains that this shortage is causing higher patient numbers per doctor, longer waits, shorter appointment times, a drop in the number of endocrine researchers, and an overall drop in the quality of patient care due to those and other related factors.
In my previous post, Quack, quack, quack! Pretendo's and Endiot's , I wrote:
"According to Corcept Pharmaceuticals (a company that produces one of the few medications used as a treatment for Cushing's Syndrome, and has set up informational resources for Cushing's patients): there are approximately 5,000 endocrinologists in the Unites States, and of that number, only roughly 600 of them have seen a patient with Cushing's. And let me tell you, one patient (or even 10 or 20) does not an expert make! Chances are good that FAR more endocrinologists have seen a patient suffering form Cushing's, but they likely didn't recognize the disease and thus the patient went undiagnosed or misdiagnosed. Studies are coming out suggesting that this disease isn't as rare as it is reported to be, but is more likely rarely-diagnosed."
When the statistics from the above article from Endocrine Today, are applied to Corcept Pharmaceutical's number break down for Cushing's, things actually are even worse because the majority of those 5,000-6,000 endocrinologists work for the FDA, pharmaceutical companies, in research, and roughly 1/3rd are in academics. Those may be worthwhile placements, but it leaves very few that see patients in a clinical setting. By Andrew F. Stewart, M.D.’s estimates, there really are only about 1,000 board-certified endocrinologists serving roughly 6,000 US hospitals. That is one endo for every 6 hospitals! And considering that larger hospitals generally have multiple endocrinologists in their department, I would imagine that leaves a great many hospitals without any endocrinologists at all. If we assume the 600 that have seen a Cushing's patient are spread evenly over the full 6,000 endocrinologists that also work for the FDA, pharmaceutical companies, in research and in academics (I personally know of some in each of those setting, so while it isn't a perfect estimate, it could be close enough), that only leaves roughly 60 endocrinologists in the clinical setting that have seen (and recognized) a Cushing's patient. 60!? That's one per state! Anyone else shocked that most of us travel cross-country to see a tiny handful of experts? If we were to specify cyclical cushing's, the numbers would be abysmal, and the current "handful of experts" would be limited to one.
He goes on to explain some reasons why the shortage exists and some suggested ways to make improvements. In among the suggestions was the statement that "Community-based support systems must play a larger role." I would like to publicly thank my online Cushing's community, along with the Addison's community. I would not have seen my endocrinologist without the help of the Addison's community. I had eventually recognized my lows for what they were, an adrenal imbalance, and they sent me to the best doctor they could have...an expert in pituitary disorders and the hard-to-diagnose. The ONE cyclic expert (No, he isn't a quack, he's crazy-qualified with a CV of Gold!) who figured out my "lows" were actually a by-product of my "highs." They helped me in a time of need and got me where I needed to be.
At that point I went all-in with the Cushing's community, and they've helped me in ways that words just cannot do justice to, but I'll give it a try anyway...They've helped me learn the ins and outs of this disease, the myriad of confusing and changing symptoms, the long and repetitive road of testing, diagnosis, long-term recovery (and life after Cushing's), post-op, surgery, helped me find the best doctors, etc., etc. And just as importantly, they've helped me to know I'm not alone and supported me every step of the way. They've cried with me on my bad days, helped me trouble shoot when I've run into road blocks, and they've rejoiced with me on good days. They've even helped me to laugh at my awful situation and symptoms (If it weren't so funny, it would be sad!). I swear they often are more upset than I am when I have hardships and are also more excited than I am when things go well! Britton was amazed at the number of Cushing's friends texting, calling, emailing, posting and PMing from all over the world when I had my pituitary surgery. But what he was most touched by was the genuine concern, interest and love he felt coming from them. In many ways I owe my life to this online community as much or more than I do the doctors who are diagnosing and treating me. I hope that in my efforts to reciprocate, I can pay it forward and bring this same level of help, education and support to others who are suffering and those who follow in my footsteps.
Thank you!
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