What’s Wrong with Health Care in America

Dr. Fogoros, a cardiologist, has written a great article describing why the medical system behaves the way it does and more importantly how to best protect yourself from the system.

Here are some of the highlights from his article:

“The fundamental issue with American health care is the rationing problem. This is not a problem of whether to ration - we don't have any choice about that, since we simply can't buy all the health care that might be useful for every individual - but how to do it. And since rationing health care is politically unfeasible (despite the fact that we don't have any choice about it), there is only one answer to the "how" problem: we've got to ration covertly.

Covert rationing means rationing (that is, withholding care) without mentioning it to anybody. And the only way to accomplish that is to have the doctors do it, quietly and whenever possible, subconsciously, at the bedside. Covert rationing requires that doctors, when making decisions about what tests to order and what care to give, must take into account something other than what's best for the individual patient sitting before them. That "something other" might be any of a multitude of factors, such as the regulations promulgated by the feds, personal financial incentives promulgated by health plans, interpreting scientific data with a certain slanted viewpoint, or peer pressure to behave in a certain way for the good of the profession or the specialty or the practice (i.e., protecting turf.) The point being that covert rationing - which, like it or not our society has fully embraced - requires, as a fundamental tenet, the systematic destruction of the doctor-patient relationship.

[This destruction of the doctor-patient relationship] explains all the seemingly bizarre behavior we see taking place every day in the American health care system. While you may be lucky enough to find a doctor who is adept at "gaming" the system, or who will take personal risks to get you what you need, you certainly can't count on that. Especially when you are dealing with a potentially life threatening disorder. You can no longer assume that whatever needs to be done will be done. You can't be passive. You've got to take responsibility for and control over your own health care.”

For the full article see:

Why the Health Care System Behaves the Way It Does

Managing Your Doctor

Managing Your Health Plan

Managing Your Own Health

More Research Labs for Antibodies

I also had blood sent to a research lab in Oklahoma. I had some confusing lab results, which sent doctors on a search for determining my specific antibody. I had a positive C-ANCA antibody test, which is supposed to by 90% specific for Wegener’s, but from my symptoms I obviously did not have Wegener’s. Since I had symptoms of myositis and a cousin who has Dermatomyositis, my blood was sent to a research lab that specialized in myositis antibodies at Oklahoma. Oklahoma also has a research lab that deals with Lupus and other autoimmune disease related antibodies. These labs are capable of multiple types of tests to confirm antibody specificity. However, even with all their technology they unfortunately were still unable to identify my antibody.

Oklahoma research blood test information and requisition forms:

OMRF Clinical Immunology Laboratory

OMRF Myositis Profile

APS Antibodies Found in Spinal Fluid

It is a relatively new concept to test patient’s spinal fluid for antibodies. I displayed multiple symptoms of APS, however I did not have a single positive blood test result. Because I had been having daily headaches for over six months and I was on immune suppressant drugs, the doctors decided to order a spinal tap to rule out an infection. Since spinal fluid would be available, they decided to send some of the spinal fluid off to the APS lab in Indiana as well as some of my blood. My spinal fluid ended up being positive for anti cardiolipin. However, my blood had been tested for that antibody for over 13 years by multiple labs and my blood was never positive. This was supportive proof for the theory that the blood brain barrier can make antibodies separate from the blood stream.

Research article from PubMed

APS Antibody Test

One of the most important lessons I’ve learned through my medical journey is which lab conducts your test is important. If lab tests return normal but symptoms suggest otherwise, it may be worthwhile for you and your doctor to find a lab that conducts research on the test you have in question because there may be perfectly logical reasons why the tests don’t agree with the symptoms. I had so many physical symptoms of the Antiphospholipid Syndrome (APS) it wasn’t funny, but all the doctors abandoned the diagnosis because my blood tests returned normal. Through my internet reading I ran across the following article that shed some light as to why my tests might be normal. There are other APS antibodies that only a few research labs are capable of testing and some people may only be positive for the obscure antibodies.

APS Article

Lab requisitions form for your doctor to send your blood to be tested.

APS Lab in Indiana

Medical Insurance Woes

I recently had some specialized blood work performed that could only be sent to one lab. The blood was drawn by the local hospital, which my family doctor uses for a lab. This hospital has recently fallen on hard economic times as many hospitals have across America. The lab technician snapped at me because the specialty lab did not send the tube or prepaid box to send the blood. I told her the hospital was supposed to charge me for the blood draw and shipping. However, she proceeded to pick up the phone and started complaining to someone at the specialty lab. At one point in the conversation she yelled over the phone, “Your lab is getting to perform the test, all we are getting out of this is a blood draw!”

It is sad and frightening that medical insurance reimbursements have driving the medical community's focus away from patient care. As a patient, comments like this frighten me that the hospital is more concerned with its bottom line than my care. It sounds like they are not interested in taking care of all of my health needs, only the ones that make them money. How is that supposed to make me feel confident that these medical professionals will make the right decisions concerning my health when insurance companies have pressured them to the point that the bottom line is first priority? Who is a patient supposed to trust?

So What Do Antibodies Look Like?

Why and how seems to pop out of engineers mouths before we even realize it. Naturally, I couldn’t help but wonder what antibodies look like under immunoflorescence. Below is a really neat web site that has actual pictures of most of the commonly tested antibodies.



University of Birmingham

Issues With New Automated ANA Test

I was monitored by a Rheumatologist for eight years when my disease was mild and only required treatment for Raynaud’s. During this time, the Rheumatologist ordered blood work once a year, which included an ANA test. The ANA test was positive every time.

Once my disease progressed to the point I had troubles walking, all of the sudden my ANA tests started to come back negative. I had some doctors question if my problems could be autoimmune related since my ANA was now negative. Fortunately, I had eight years of positive ANA tests to make them question the new results.

One of the Rheumatologist I saw had seen this happen to other patients. He told me that most labs had recently switched to a new automated method to test for ANA. To save money and hopefully standardize test results, labs switched to an automated method where a computer scans the blood instead of a specially trained lab technician. He had even seen a patient with raging Lupus all of a sudden have a negative ANA test. He sent my blood to a lab that still used lab technicians trained to titer the blood and look at the immunoflorescent patters and sure enough I was still ANA positive.

Most doctors, especially doctors who are not Rheumatologist, do not know that the ANA test they order has changed and that they may need to order the older more expensive method to confirm the results in a patient highly suspicious for autoimmune disease.

Doctor Comment on New ANA Test

(You may have to create an account at medscape to read the article. It is free and worth it.)

Journal Article on Automated Methods

In the sixth paragraph under the discussion section, the article states that the automated test detected less true positive results in patients with autoimmune diseases other than Lupus such as Rheumatoid Arthritis and Polymyositis/Dermatomyositis.

Information about other antibody testing methods:

Enzyme-Linked Immunosorbent Assay (ELISA)
Immunoassay
Western blot