For those of you who have been following the Simants’ medical saga: “In Search of Michael’s Brain”, I apologize if the next few paragraphs are a bit redundant to you, yet you will pick up a couple of tidbits that will help in understanding my arguments to follow.
12 years ago this November, I began a journey that was highly unexpected. After a very dizzy and blurry dinner on a Friday night, I began to experience slurred speech, tremor on the right side and difficulty walking. Over the following two weeks and three MRIs, countless heart tests, CT Scans, Visual Evoked Potentials, Visual Field tests, a spinal tap and more hospital coffee than anyone should ever be allowed to consume my lead doctor a neurologist named Webb concluded that I had a case of probable MS.
Over the next two years, a few more MRIs and another spinal tap, I continued to have occasional issues. Then in December of 1999, it all seemed to stop. More importantly it stayed stopped for the next 9.5 years -- save one brief interruption. In early 2008, I got dizzy and fell down the stairs. My PCP recommended that I see a neurologist. He ordered an MRI. He concluded that I did not then, nor had I ever had MS (yes, he had copies of all the records from 1997-9). When I pressed him to explain what had happened in 1997, he said it was a virus. A virus that in 1997 was unknown.
Between 2008 and 2009, I changed PCPs. At my first visit with the new PCP, I hand delivered the 1997-9 records and the 2008 records and had a conversation with him about each.
At roughly noon on Monday, June 22, 2009, it all came back like a song – a dizzy, blurry, shaky song. I called my PCP. He asked that I come in to see him. I did. I was hoping for a referral to a neurologist in town. Instead, I was told to go to the Emergency Room since he felt that I had a stroke. I tried to explain it was the same as 1997 to deaf ears.
We spent FOUR hours in Emergency Room waiting room (good thing it wasn’t a stroke). When we were finally called back, I tried to explain to the ER Doctor that it wasn’t a stroke or tumor or whatever, and he should go straight to MRI. Instead, he ordered a CT scan. After it was clear, he ordered the MRI. Then he consulted with a neurologist, scheduled me an appointment for the next day and sent me home.
When we saw the Neurologist the next day, he ordered a spinal tap (not sure why this wasn’t done when I was in the ER). When it came back clear he sent me to an Ophthalmologist to determine why I was still having vision problems, and hoping that the vision problems would help determine diagnosis. That brings us up-to-date.
I have insurance – good insurance. To date, the amount that Doctors have billed to the insurance company is $10,852. My out-of-pocket has been a mere $195. More important (and strange) is the amount that the insurance company has actually paid. This amount is $2,953. That’s a reduction of 73%. If you assume for a moment that the medical provider is still making a modest 5% profit, the actual cost of the medical service provided was $2,805. That is a markup of about 385%. In short, healthcare is ridiculously overpriced.
Assume for a moment, that I did not have insurance. How would I cover $10,852 in medical expenses? Assuming that I paid it off in monthly installments with no interest: 1 year: $904/month, 3 years: $301/month, 5 years: $180/month.
According to the National Coalition on Health Care (link), in 2007 46 million Americans were without health insurance and the number of Americans without health insurance is rising at the rate of ~1.15 million per year. Additionally, $100 billion each year is spent to provide medical care for those who are uninsured. $34 billion per year is spent by hospitals providing uncompensated medical care.
The cost of medical care for the uninsured or underinsured is being covered by the mark-ups that medical providers are billing that fall beyond their markup. By providing health insurance to all Americans, we will be able to reduce the cost of medical care for all Americans.
MEDICAL RECORD KEEPING
In the course of all of this, we have had several interesting episodes with medical records. We had a need to get the records from Dr. Khan (the Neurologist from the 2008 escapade). As we began to try to find these records, we discovered that Dr. Khan had skipped town to take a fellowship somewhere, and no one knew where. Additionally, he had apparently taken his records with him, burned them, used them for wrapping paper or left them in a ditch next to his old office. They were no where to be found. Finally, I called the office where my old PCP had worked on the off-chance that he had actually sent them over. After three phone calls, $25, and 45 days, we finally received those records. Buried deep within were the write-ups and dictation from Dr. Khan. Very sketchy, sort of misleading and quite evasive, but they were there.
The records were given to my new PCP (Dr. Ford) less than one week prior to my visit with him on June 23. The record packet that I had given Dr. Ford was 105 pages of information that provided nearly conclusive evidence that my June 22 episode was not a stroke. Yet, at any rate, he chose to pursue my symptoms as a stroke. Clearly ignoring the 105 pages of information, he insisted on sending me to the ER to explore a stroke.
In the Emergency Room, even after hearing that Dr. Ford had records that would indicate otherwise and that my symptoms began with a sudden onset some 28 hours earlier. Clearly past the “point of no return” for stroke patients or the impact of the majority of anti-clotting medications that are typically given. Yet, a CT Scan was performed – needlessly. A CT Scan that was billed at $1889 and a reading of the CT Scan that was billed at $198 -- a wasted $2087. Finally, an MRI was ordered, but to look only at the brain – no C-Spine, no Spinal Cord. Even though my story had been told and the CT Scan was clearly normal, they continued to think Stroke.
When Dr. Boop referred me to an Ophthalmologist, I was left on my own to find one. When I did, the Ophthalmologist (Dr. Berry) asked me to contact Dr. Boop to have records sent over. Nine days later, sitting in Dr. Berry’s office I learned that he did not have the records from Dr. Boop. Now here is the kicker to this one. Dr. Boop and Dr. Berry both work for Baptist Health System. Their offices are “a line drive to left center” from each other. Dr. Berry had to call Dr. Boop and have the records faxed -- seriously, phone call and fax.
I have either had terrible luck with medical records, or there is a serious gap in medical record keeping. With the technology that exists today, it is far outside of my realm of understanding why such a gap exists. There needs to be a considerable investment made in the centralization of medical records. This system should be secure, yet contain the ability for the patient to access their full-range of records (including test results, films, scans, etc) on a whim. There is no reason that phones/faxes should be used to transfer records. Patients shouldn’t have to hand carry records from doctor-to-doctor.
Additionally, doctors should be held accountable for not taking time to read and understand a patient’s medical history. I understand that this will require more time to be spent per patient, yet at $200 for 10 minutes is that really too much to ask? If Dr. Ford had been paying attention 5 days prior to my visit with him on June 23 or had looked through my records before walking into the exam room, then he would have known that it was not a stroke he was dealing with. He would not have sent me straight to the ER. He would (and should) have made a referral to a Neurologist and called it done. The question that I am continuing to struggle to answer is if I should continue to see Dr. Ford, or should I go elsewhere?
ELIMINATE UNNECCESSARY TESTS
As I illustrated in the above story, the Emergency Room continued down the wrong path, even after they had been told it was the wrong path. They were insistent on continuing to pursue a stroke that did not exist. This caused an unneeded CT Scan and an inadequate MRI Scan to be performed. As it was the MRI showed two small areas on the brain, yet because it did not include the C-Spine and Spinal Cord other areas susceptible to MS-related lesions were not scanned.
Additionally, while in the ER, I was tapped for an IV – that was never accessed. I was given an EKG and connected to real-time monitoring – again unnecessary.
I am not a medical professional. I am not a politician. I am only a person who has followed a twelve year path and learned a few things along the way. In my experience, the healthcare system is broken. There are far too many gaps in information sharing and there is a wide gap between billed costs and real costs. It is time that this issue is corrected.