There is a reference book that health care providers can use to figure out what they can expect to be paid from insurance companies for medical procedures in the US. Prior to my Dec 15 surgery with Drs. Reich and Redan, I looked up what that average pay-out (based on Medicare rates) is for adhesiolysis. I about fell out of my chair! $640!!! I had heard some adhesiolysis surgeries in Scranton have taken up to ten hours. That was a moment of truth for me. That "$640" told me why there are not surgeons for us. If we are looking for a battle cry....this is it! Hang with me on this one. Let's look at it.
Do the math. Take that $640 and see how far it goes. Pay the office staff. Pay their benefits and employer's share of FICA. Pay the professional dues. Pay the rent and the utilities. Pay the many many thousands of dollar in malpractice insurance (and any doc who wants to work with us is going to pay huge premiums...$50000-$100000 per year, I would guess....because we are so high risk). Think there is still of money left over? If so, then you have never run a business. If I spent years in medical school, would I choose a career path that would promise minimal compensation with maximal headaches? Nope...not me. There are bills at home to pay, too.
So let's look at my adhesions treatment options. 1) I get all my care at state-subsidized teaching facilities (i.e., medical schools). Students there have to log their "hours" doing surgery. Hmmmm....wonder which student would be getting their hours on me. Even the clumsiest student needs his/her hours. 2) I do not seek a surgical solution. What a difficult situation I am in to know instinctively that the only "cure" for me will be surgery...but to also know that surgery is often the cause! 3) I find a surgeon who does a lot of different types of surgeries so that the compensation she/he gets for those other surgeries can help counterbalance financially what they get from my procedure. This route means that they would not have specialized in adhesions. I've never met another person like me in real life. So, how common is my predicament? How often would this doc have a patient like me? Any task improves with repetition. How often has this doc done "my" type of surgery? 4) I choose the only facility in the US with physicians dedicated to working on adhesions. And I pay fees my insurance *should* be paying.
We must recognize that we ARE in a heckava position..but the REAL fight that we should be waging is with insurance companies. And that is a whole bunch of work and the pay-off....will be years down the road. Anyone interested in taking that one on? I am. Let me know and we'll make it a goal that 15 years from now, that insurance companies will honor our medical needs with their dollars. 15 years? I figure it will take that long. $640 is an insult to US.
I suppose it is a whole lot easier to make physicians or their staff the focus of our frustration. The risk of this focus is that the PA doctors will say "screw this" and their pioneering actions in creating an center to treat adhesion patients in the US will have been a "mistake." This option for us will go away. Nothing obligates them to continue this work. That is a desperate thought for me.
This week, I worked 10-12 hour days...by choice. Today, I will take no pain meds. With a clear mind and a happy and joyful heart, I will spend the day babysitting for our 2 year-old wild-child granddaughter. We will dance. We will go to the park. I'll hold her in my lap and pump my legs to make the swing go high. When she runs the other way, I can run to catch her. This week...this day...and others like it....is what we were shopping for when I went to Scranton.
In friendship, Mary
-- Mary Wade