Sunday, January 04, 2009

The best health care in the world?

"Seven years ago, the World Health Organization made the first major effort to rank the health systems of 191 nations. France and Italy took the top two spots; the United States was a dismal 37th. More recently, the highly regarded Commonwealth Fund has pioneered in comparing the United States with other advanced nations through surveys of patients and doctors and analysis of other data. Its latest report, issued in May, ranked the United States last or next-to-last compared with five other nations — Australia, Canada, Germany, New Zealand and the United Kingdom — on most measures of performance, including quality of care and access to it. Other comparative studies also put the United States in a relatively bad light. "-New York Times, August 12, 2007

Many Americans suffer under the delusion that our medical care is the best in the world. Maybe they're equating "most expensive" with "best." Perhaps they're talking about the care the wealthiest, best insured among us receive. Most assuredly they're not talking about the uninsured, the folks on Medicaid, the folks with chronic physical or mental illness, the people who happen to live in states where human services are a low priority. Anecdotal evidence might not give a complete picture, but it's a telling part of the whole...

First, there's Gabriel's continuing sad story. I convinced the hospital not to discharge him on Tuesday, when they had done absolutely nothing for him. I asked the doctor directly, "What was the point of his being there, then, if you weren't going to try to adjust his medication?" I also pointed out that Gabriel himself had asked to be admitted (since doctors seem never to read the charts, I thought this fact might have eluded the doc). He agreed to start Gabriel back on Clozaril. But Friday he called to say Gabriel had not tolerated the drug due to a high heart rate, so he'd taken him off it and was discharging him on the same medications he had been on when he was admitted. I was SO frustrated. I asked him, "So what you're saying is that he will have no life, that he will never be functional again?" The doctor assumed a condescending tone of voice and began lecturing me: "He'll never be normal, he'll never be able to hold down a job..." With great exasperation, I replied, "I KNOW about just being able to carry on a conversation, or do something besides pace and laugh all day?"

Well, I ranted in my car all the way to the hospital and was sinking into despair the rest of the day. Saturday morning I got online and started researching antipsychotic medications and alternatives to Clozaril. I made two important discoveries. Gabriel takes an injectable form of Risperadol and an oral medication called Invega. It turns out that basically they are the same medication! As one article on the oral med was titled, "Invega-Can You Say Patent Extender?" No wonder the combination of the two meds isn't helping's just a huge dose of a single medication, packaged differently. The second thing I discovered was actually some information I had caught in passing on NPR a couple of years ago. The NIMH did a clinical study of the efficacy of different second generation antipsychotics, but at the insistence of some scientists on the study committee, one first generaton antipsychotic medication was included in the study. Now it is a common belief among psychiatrists that the second generation drugs are far superior to the first, but in this study, a moderate dose of the first generation drug was found to be every bit as effective as the newer (more expensive) ones. Plus the old drugs don't have the same serious metabolic side effects as the new ones (weight gain, diabetes, high cholesterol, etc). So why have the old drugs fallen out of favor? According to that NPR report a couple of years ago, it boiled down to the aggressive marketing by the drug companies.

Anyway, if you've managed to read through all of that, the point is that I'm going to ask his doctor to try him on one of the older drugs. He's never been on one before, so maybe he'll do just as well, or better, and might be able to lose some weight and get the diabetes under control.

Second anecdote concerns that pain I've had in my legs for at least 4 years that has severely limited my activities. I used to walk a couple of miles several days a week, even jogged part of the way. Then this pain began, getting so bad when I walk or stand that by the time I walk around the grocery store, my legs are killing me and are numb and I have this tightness in my hips like spasticity. Over the last 4 years, I've become less active out of necessity, gained a lot of weight, developed diabetes, and had that heart attack. Meanwhile, I've been telling every doctor I've seen about this pain, hoping that they would find out what's wrong and do something to help me. One doctor wrote it off as diabetic neuropathy. My current doctor tested my segmental blood pressure, to make sure it wasn't PAD. When it wasn't, she stopped listening to my complaints. Last spring, when I took the boys to the arts festival, the pain and tightness in my legs was so bad, I thought I wasn't going to get back to the car! So the next time I saw the doctor, I asked her if she would order an MRI. I had done enough reading online by then, that I was pretty sure I had spinal stenosis. I had the MRI (she still didn't get it, ordering it because of "back pain" and wanting to check for a disc problem). When I finally got a hold of the nurse for the results, she told me the MRI just showed "normal wear and tear." Shortly thereafter I had the heart attack, so I never followed up with the doctor about the MRI, until the last time I went in. I finally thought to ask her, "Are you sure that MRI didn't show any signs of spinal stenosis?" She checked my chart and said, "Yes, it showed moderate spinal stenosis." I wanted to cry. After suffering this pain for 4 years, not to mention seeing my activities so limited and my health deteriorating, I had finally been diagnosed and the diagnosis had simply been filed away!

So, I did more research and found that 3 years ago the FDA approved a new, minimally invasive procedure for this condition that has given a lot of people back their mobility and their lives. Tomorrow I have an appointment with an orthopedist who does the procedure and am fervently hoping that he thinks I am a good candidate for it.

My point is this: if we have the best health care in the world, why did no one listen to me all those years while my health deteriorated and why did I have to ask for the MRI and why was I told that I just had "normal wear and tear" and why did I have to find the possible solution online and refer myself to an orthopedist? To those who oppose any changes to our health care system, just remember, it might be working for you, but for many folks, it isn't working. Some people are driving a Lexus or Escalade, but many others are driving an old jalopy, others are riding the bus, and millions have to walk.