How this blog saved my life and saved me $100,000
Summary: A few months back, I told you about how my neck had gone bad, really bad. At that time, I was in the middle of a six-month dive into pain, alleviated only by gobbling unwholesome quantities of Percoset.
A few months back, I told you about how my neck had gone bad, really bad. At that time, I was in the middle of a six-month dive into pain, alleviated only by gobbling unwholesome quantities of Percoset. Three weeks ago last Friday, I had an amazing surgery that relieved my pain and gave me a neck that feels 20 years younger. And it was all because of this blog.
The experience has proven for me that there is a pressing need for a new economics in medical care, especially with regard to the technology we have access to as health care customers (as compared to being "patients"). Patients have patience, waiting for a prescription from their doctor to fix their ills. Customers can do research, issue a call for proposals so to speak, and make decisions that free them from the confines of their doctors' ability to earn fees for using certain products.
In many ways, the medical technology market today is at a stage similar to the computing technology in the late 1980s, when IT departments handled all buying decisions and people were discouraged from bringing anything into the enterprise environment that had not been approved by IT. Today, most people are their own CTO, making their decisions about what kind of computer, wireless handset and network to use, which the enterprise accomodates.
Here's what happened. After I posted about the messed up economics in healthcare, I received email from Tom Rawles at Spinal Kinetics, a developer of spinal disc replacement devices. He said the company was in early trials of its M6 Artificial Disc and that, if I qualified for the trial, they'd be happy to have me.
I'd already been turned down for a disc replacement surgery by my insurer and, despite the fact I have an excellent spine surgeon in the Northwest he did not know of any trials for what I needed, a "multi-level replacement," i.e., I needed more than one disc replaced. In comments on that posting, many of you agreed with me that the insurer was the main culprit.
But I've come to understand that it is also a matter of the sales and marketing channel for medical devices being very narrowly focused on the relationship between the doctor and device manufacturers. In many cases, a doctor can make more money by recommending one device over another. Because of that close link between doctor and manufacturer, some regions have many more options available to patients than in regions that are impractical for startup firms to reach. I should add as an aside, the medical device market is, for the most part, a build-to-be-acquired market specifically because an acquisition is the most expedient way for a startup device maker to get a sales channel. This means the products of large companies enjoy a huge advantage over new contenders.
In my case, the Spinal Kinetics M6 Artificial Disc was entering the very first stage of clinical research in the United States. The company has already sunk as much as $28 million into developing the disc replacement device—they will sell for between $5,000 and $7,000 apiece, the clinic estimated. They are putting the devices into 30 people as a first step toward Food and Drug Administration approval. After this phase, a blind trial will follow, and it will take two to four years for the FDA to approve.
I was extremely lucky to get into the trial. In some ways, my posting was a call for proposal as it the Vendor Relationship Management group has described how customers will query the market for options when buying. But it was also a matter of social connection. Tom Rawles read my blog and it carried some weight because I write for a recognized brand name in technology publishing. In short, a combination of factors came together that don't generally exist for connecting customers to new medical technology. My doctor had never heard about Spinal Kinetics until I showed him the product.
I was also taking an extreme risk. To get into the trial, I had to give my neck over for an experimental procedure. Mine was the fifth of six such surgeries to date. Fortunately, Spinal Kinetics was working with an outstanding spine specialist in Los Angeles, Dr. Carl Lauryssen. As Dr. Lauryssen told me when we met for the pre-surgical consultation, if there was a significant risk due to the surgeon, I'd have the wrong surgeon. I was impressed with the doctor and, after extensive research, I had come to the conclusion that the Spinal Kinetics disc was the most advanced solution—it offers the same range of motion, six directions, that a human disc does, and it was designed to provide increasing resistance to movement with components that make it far hardier than other options.
I took the plunge, though I wouldn't suggest anyone do so without doing extensive research about the company and device, as well as about the doctor and hospital where the surgery will take place.
A new medical device and healthcare economy will demand that customers, the people formerly known as patients, will be able to research technologies, companies and doctors. That also means that technologies, companies and doctors will have the opportunity to develop brands that command premium fees. Ultimately, this will change the way insurers compensate the insured, because it is conceivable that other factors than what your doctor says is needed will come into play. The trading of access to one's body (or information about our bodies) for access to new technology, for instance, could offset some of the cost of a procedure, a factor that should impact the payment by an insurer dramatically in many cases.
Speaking for myself, I am sold on the value of participating in a trial based on extensive disclosure of information. The surgery I had would normally cost about $75,000, according to HealthGrades.com. Since I had two discs replaced, the cost of just the devices was between $10K and $14K, and there were other features of the operating room and hospital that would have cost me $100,000 if I'd paid for this procedure on my own, which was my only option if I wanted to avoid having my neck fused.
Best of all, I woke up without the pain I'd had for years. (Check out this animation of the procedure, which doesn't show the person whose job it was to hold my esophagus out of the way for a couple hours—I felt like I should tip this guy.) The extreme pain of recent months was gone when I woke in the recovery room, and numbness in my left arm and fingers has been abating consistently since the surgery. I lost only two tablespoons of blood in a two-and-a-half hour surgery and walked out of the hospital, without any need for a cervical collar, only two days later to fly home to Seattle. It is an incredible outcome, one for which I will be eternally grateful.
Now, if we can only figure out how to make this kind of outcome more easy to discover and pay for. That's a battle for after I finish my recovery. For now, I am happy to have my life back.
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Talkback
Great story and God Bless You and this Blog
I agree
I was once diagnosed with a brain virus That seemed very convenient to me since there was nothing that could be done (then) and no cure. I think the diagnosis was hogwash and my symptoms were later diagnosed, correctly I think, as an allergy.
My granddaughter has had a recurring cough almost since birth about 4 1/2 years ago. Each doctor she has seen (6 and counting) gave a different diagnosis, none of which were correct.
I could go on and on.
But of course we must pay the doctor even when they are wrong. NONSENSE! Would you pay a plumber if he couldn't find a leak or for making a leak worse?
Would you pay a computer repair person for making your computer unusable?
I think we need to change the system to mandate that doctors get paid only for performance. And we need to find a way to reduce drastically the fees for in-patient procedures. Doctors justify their fees by explaining that they hold our lives in their hands. But when they screw up, it's "Oops. And by the way, pay me anyway."
I better stop before I start with the four letter words.
Don't know if you're religious or not, but
church or synagogue.
Think about it. Your blog was one of
millions put on the web that day. The
maker of the device somehow came
upon your blog. They just happened to
have the trials going on - for all of 30
people out of a population of 300
million.
The odds of all the above happening are
probably worse than hitting mega
millions lottery, but you hit. Sounds like
a "somebody up there likes me" event.
wow
very cool
I would like to see more public involvement and a quicker road from testing to availability for these kinds of procedure.
While I don't believe in the universal health care solution, I think insurance should pay for any valid medical procedure, even experimental, as decided by the doctor, not by the insurance company.
RE: How this blog saved my life and saved me $100,000
RE: How this blog saved my life and saved me $100,000
It was worth it (insurance paid all but $11 of the $40,000+ cost,) but I was astounded at how smoothly your procedure went. I can only hope that this gets approved quickly and is widely adopted.
Looks like you hit the "Medical Lottery!"
fusion surgery
Insurance on the other hand is much worse than you had 15 years ago. I'm already $thousands out of pocket and my insurance company informs me they will not pay for $20k of epidurals and MRIs I had prior to surgery and I haven't even started to get bills for my actual surgery yet.
RE: How this blog saved my life and saved me $100,000
I love happy endings
Bottom's up to Spinal Kinetics -- and better health.
Great Story!
Thanks for sharing!
This is a fool's bargain
Diagnosis does NOT require particular intelligence. It DOES require experience. Attempting to cut the primary care physician out of the loop to save money doesn't work. The primary care MD is the MOST IMPORTANT cost-saving mechanism in that loop.
RE: fool's bargain
Diagnosis isn't the issue
doctor, and I didn't write what you suggest.
Being an informed customer of medical technology is never
a bad idea. Only a fool would rely blindly on a doctor, a
lawyer, or a technology writer.
Additionally, the primary care physician wasn't even
mentioned in my posting?though my GP was the first to
diagnose my problem as an impingement of the nerves at
the C6 or C7 vertebrae. The doctors discussed in the
posting were all specialists, and there is evidence of the
geographic limits on new technology, as I explained. If we
can increase the flow of information, that can be
remediated, and perhaps we can create new economic
forces to help speed new technologies to market.
Finally, cost-savings isn't the most pressing issue when it
comes to new technology. Rather, we need to find ways to
overcome early-stage economics that accelerate
efficiencies in medical technology, as we have in consumer
electronics. We can have less expensive high-end
technology for everyone if we move the market in this
direction through partnership between doctors and their
patients.
RE: How this blog saved my life and saved me $100,000
In any event, thanks for the info. Something to follow up on ...
RE: How this blog saved my life and saved me $100,000
I'm glad it worked for you, too!
RE: How this blog saved my life and saved me $100,000
Donna
FDA
Due to my stenosis my right hand does not work very well and after 6 months the muscles in my hand and forearm have atrophied a lot. The longer the nerve is pinched the more permanent damage to my nerve. For me it was a no-brainer. I'd rather give up a few degrees of neck motion to avoid loosing right hand function. My doctor said that post-op I may no longer be able to touch my chin to my sternum. I can live with that.
Dr. Lauryssen